Monday, December 14, 2009

Pictures!!


She is so happy to be a sitter now.

Juliana loves to chew on her pacifier and somehow manages to put the whole bottom of it in her mouth while still sucking on the nipple part.

and thinks it's very funny by the way or it could be the person holding the camera that she finds so funny.



Ready to go bye-bye.




What a tangled mess she's weaved. We still haven't figured out a way to keep her from getting all tangled. The only way to do this is to strap her in a chair or a swing. She loves to play on the floor so much I just can't deny her of her fun. So about every 5-10 minutes I untangle her but it's worth it to see her develop into a baby on the go. She can now do a modified army crawl and is pretty good at slithering backwards.


Saturday, November 28, 2009

So Much to be Thankful For

This year has been an amazing one in the lives of the Delgado's. One year ago we were spending most of our time in Boston and actually had Thanksgiving dinner in the hospital cafeteria. We had just moved out of the ICU to a regular room on the medical floor. We had already seen some very bad moments with Juliana and were so grateful to have a room where we could finally spend some quality family time together away from all the drama of the ICU.

Juliana was still a bit yellow from the liver disease. We had just started the Omegaven. Things were definitely looking up, but I couldn't imagine where the future would take us. At that time I couldn't see our lives beyond the next week. We were literally living in the moment. Plans for Juliana's recovery and still pending surgery were ever changing. They still are but now that we have become accustomed to this life, it's much easier to see beyond the next week. We know Juliana will have her surgery at some point in her life (hopefully the next year) and we have met people along the way who have traveled a similar path. We know what the possible battles we will face look like and have an idea of what to expect in general. We all know that Juliana doesn't follow the rule book at all so I have mentally prepared myself to just deal with whatever comes our way.

We have made some great strides since Juliana's birth and I am so grateful for each and every moment. This year Juliana finally made it home from the hospital after 7 long months. We survived our first major septic episode and made some new friends in the PICU. Making it through that episode was probably the worst we have seen yet, but she's a trooper. We have been hospital free for 5 months now and are very close to tipping the scale for more time spent at home than in the hospital.

Juliana's therapy has been going really well although most of the work is done outside of her therapy sessions. Just yesterday she sat up on her own for the first time (I don't count the times I was able to balance her for a few seconds). We were waiting to go into the O.R. to get her tubes put in and were playing on the exam table in the room. I sat her up and let go and she didn't fall over. She held it for a few minutes, so when we arrived home later that afternoon I pulled out one of her sit and play toys and she sat for nearly 20 minutes playing without falling over. She hasn't figured out how to get to the sitting position without help but she can stop herself from falling over. I'll put some new pics up later.

She is continuing to become more and more vocal. We have an appointment on Monday with the audiologist. I am anxious to find out how much her hearing has improved since getting the tubes in place. The ENT said there was a lot of fluid in both ears (more so on the left) so we should see a big improvement. We haven't put her hearing aids in yet and won't be able to till tomorrow, but I can already see an improvement. She is responding without the aids in and is babbling quite a bit. Despite having the procedure done yesterday she was very happy and playful the whole day.

We are very fortunate to have the support we need from family and friends and appreciate every moment of every day.

Wednesday, November 4, 2009

November 9,2009

So once again not much is going on in the Delgado household. We finally got the first dose of the H1N1 vaccine for Juliana and Omar is scheduled to get his this week. Fortunately everyone has been healthy outside of the normal postnasal drip which we are treating with the occasional dose of Mucinex.

It is getting harder to get things done now that Juliana is growing. Lately she hasn't been into taking naps during the day and has begun crying for attention. We think Nana has been spoiling her by holding her often during the day while I am at work. Unfortunately I just don't have enough time to hold her all day, but I have managed to skip out on a few chores to give her a little extra cuddle time. It still is wonderful to hear her cry. I think of all the months of silence even after extubation and it just brings so much joy to my heart to hear her voice. We are getting more sounds out of her with some coaching. She says "ahhhh" and continues to blow raspberries.

This week we will be seeing a new ENT to discuss the fluid in her ears. It's just not going away and tubes are most likely the next step. Usually this procedure isn't a big deal, but for Juliana it would require general anesthesia which in turn means intubation. The problem with intubation is that we are placing a foreign object down her airway and into her lungs which can possibly introduce bacteria that can lead to pneumonia. Sounds like a shot a in the dark but considering her last minor procedure that was completed and required intubation landed her in the ICU with bacterial pneumonia, that is not a shot I am willing to take. Her pulmonologist is on the same page so we are seeking other alternatives to general anesthesia to get the tubes in place.

We had another uneventful trip to Boston (no phone calls on the way home). They made a few adjustments on her TPN but overall everything is looking good. She continues to grow at her own pace and is now 7 kilos (or approx. 15 1/2 lbs.) She has not made it on the charts yet for height and weight but her head circumference is about the 5th percentile for her adjusted age. I just have to hope that what they say is true about big heads. Fortunately for Juliana we never put anything over her head for two reasons. One it's much easier to run her central line out the top of her clothes and away from diapers and ostomy bags and two she gets so mad if you even try.

The prayers are working so keep 'em coming.

Monday, September 28, 2009

Hearing Aids !!!

So I have been a very bad blogger and have neglected to update on the newest activities in Juliana's life. We have been really busy just maintaining day to day between work and home and now work at home.

Juliana is fabulous. She received her new hearing aids on the 17th and it was a very emotional moments for both of us. I laughed as she cried. We put the hearing aids on her for the first time and sat back and waited for her response. There is about a six second delay from the time you turn them on till they actually begin working. It was wonderful to see that she could actually hear even though she was terribly upset. She had a look of confusion for the first second which was followed by the biggest crocodile tears ever. All I could do was laugh. I was so happy to know that she would finally be able to hear me sing to her or hear her nutty brother acting crazy or listen to a lullaby.

By the time we left the audiologist she had stopped crying. I put her in the car to go home and the second I turned my back on her she had pulled one of her hearing aids out and was twirling it around in her hands. For the next few days this was her new trick. Let's see how many times I can pull this hearing aid out to make mommy so frustrated that she won't put it back in. Well it didn't work because this mommy has a lot of patience. Every time she took one out we would just put it back in with out a fuss. I wasn't going to let her use this to get attention and I wanted her to know that no matter how many times she pulls it out we are just going to put it back. Within five days she stopped fighting me over them and just leaves them alone now (mostly). I can put them on in the morning without a fuss and she typically will leave them in until she is tired. When she is due for a nap or it's bedtime we just take them out anyway and put them back when she wakes up. One of the benefits of having a child who is hard of hearing is that you can quiet a room for naptime instantly.

Her reactions since having the hearing aids are priceless. When we arrived home that first night, she cracked up listening to her brother playing and talking to her. She is laughing and smiling much more. Vocally she has actually been a little quieter than usual. I think she is just absorbing all of the noise that she hasn't heard in about 6 months. Overall we are very pleased with our decision to get hearing aids for Juliana.

The hardest part about the hearing aids is rolling. Juliana loves to play on the floor and roll around which causes her aids to whistle. I don't think she hears this as much as we do so we are trying to just get used to it. She is holding her head up now when on her belly and has been trying to pull herself up when in her high chair or car seat. She is definitely growing and progressing physically. I am so grateful that she is developing normally in the physical and mental aspects. She is doing it on her own time but we have known since day one that Juliana does things on her schedule and that's fine with us.

We are still weaning on the oxygen since her last little cold that brought us up to 2 liters. We are back down to 1 now and I am hoping to wean a little more. Hopefully we can keep the germs and the colds out of our house this season. I would like to see Juliana come off oxygen by the spring so she can have her surgery. Only time will tell.

Monday, September 14, 2009

Fever!!!

After a pretty uneventful summer, Juliana decided to end it with a fever. I went in to check on Juliana and complete the 5 am diaper change duties, I noticed that she was a little warm. I took her temperature and the thermometer read 101.8. I have never been so worried about a baby with a fever as I am with Juliana. Within 20 minutes bags were packed and loaded into the car and we were off to the hospital. I drove straight past Waterbury Hospital and headed to Yale. If we needed to be admitted for any reason that's where we would end up anyway.

I arrive at Yale and go through the list of medical issues and medications. The nurse takes us right in to a room to get us settled and five minutes later our favorite resident walks in. This doctor went the extra mile for us while we were in the ICU in April and May. She took the time to contact Children's in Boston to cooridinate Juliana's nutritional needs with the protocols set by the CAIR clinic. She was able to get permission for us to give Juliana her Omegaven while inpatient even though it is still investigational and not approved by the FDA. She is very genuine and really knows Juliana's story. She even remembered how many centimeters of bowel Juliana had removed. I was so glad that I did not have to explain all of Juliana's medical history and the fact that she knows us really saved us from an admission.

We had blood culures and nasal swabs sent down to the lab. We also had some regular blood tests done to check elctrolytes and a CBC which is a "complete blood count". The CBC checks white cell counts, hemoglobin, hematocrit and others. I am always concerned about her electrolytes. Her sodium levels have been known to get dangerously high without any other real signs of dehyrdation. Fortunately all of these test came back normal. Her pulomonogist was contacted and she felt that we could ride this one out at home so once the nasal swabs came back negative for any major respiratory virsuses or flus we were able to head home. She was also given a 24 hour dose of iv antibiotics. If the cultures had started to grow anything we would have had to come back to the hospital for more antibiotics and cultures. I waited by my phone for the rest of the weekend hoping it wouldn't ring and it didn't. It's now been more than 48 hours so it's safe to say that Juliana does not have a line infection.

I have come to the realization that I will never get over the emotional trauma from having to put Juliana on ECMO. As I have expressed many times before I am very scared of what this winter will bring. So I have decided that the best way to deal with this is to be completely proactive. This may mean that we have Thanksgiving dinner at home with no visitors or that we will have to save our Christmas celebrations till the spring. It also may mean that any visitors we do have will be sprayed down with disinfectant at the door and asked to wear gloves, gowns and masks. It may not come to those extremes but we will definitely be making all of the necessary extra precautions to make sure we can keep our family as healthy as possible for Juliana's sake.

We have already begun working on getting our Synagis shots approved for the winter and both Juliana and Omar Jr. will get their flu shots in couple of weeks. Omar and I have plans to get ours shots next week. Since the onset of "swine flu" the schools have become very diligent about disinfecting common areas which makes me happy. Worrying about what will or can happen doesn't really help any, but being prepared for what will or can happen will help in a big way.

Through all of this Juliana still remains joyful and playful. She doesn't seem to know that she is sick and I am not going to tell her. Even with a second tooth pushing up she continues to laugh and play and light up my world.

Tuesday, September 8, 2009

Break Through

Juliana finally broke skin this weekend. She is surprisingly in good spirits and not very cranky at all. We are also scheduled to get our new hearing aids next week. I can't wait to see the look on Juliana's face when she can actually hear sounds like before. Unfortunately when we went to see th ENT for medical clearance we found that she had fluid in her ears again. Nothing to really worry about just yet but if this becomes a chronic issue and/or the fluid doesn't clear up we may have a discussion about tubes.

It's been very nice to not have any real news to report. Hopefully we can keep it this way. I'll try to get some pics up of the new tooth.

Friday, August 21, 2009

The Waiting Game

We are back from our trip to Boston with no distressing phone calls on the drive home. The visit was pretty uneventful and probably one of the shortest times spent in clinic. Now begins the waiting game. As the respiratory virus season approaches, we know for sure that Juliana will not be having surgery. Since she is still on oxygen her surgeon has decided against reanostomosis till at least after the winter. I already knew that plans for surgery were heading in this direction. Our next clinic visit is in two months which is the longest we will have stayed away from a hospital since Juliana's birth.

Our goals still remain the same for now, stay out of the hospital, continue to grow and avoid infection at all costs.

Wednesday, August 19, 2009

Pictures!!!

Off the O2 for a moment... she pulled her tube so Dad took the opportunity to get a pic with a tube/ tape free face

Juliana has to have her own spoon when she eats or we end up fighting. There's no food on this spoon but it's still great for chewing on.

Eating is hard work....



She is actually enjoying sitting in the Bumbo.

She loves her music player... also great to chew on.

Short Gut at Home

Learning to live with short gut at home has been quite an adventure. I am happy to say that after six months at home I have become pretty efficient at handling supplies and routines. It did take some time to get used to everything. Juliana is on oxygen and also receives TPN/ Omegaven through a Brovaic line. She also has an NG tube for feeding and two ostomies for pooping.

Organization is the one tool that makes all of this possible at home. We have tons of supplies for everything related to Juliana. I have a dressor set up in the living room with all of Juliana's medical supplies. Keeping everything in one place helps me to stay on top of all our supply needs.




I set up daily bags of the basic supplies we need each day to set up her TPN/ Omegaven. I have found this very helpful for get things set up in a hurry. I can get TPN/Omegaven setup and hooked up in about 15 minutes.


Set up consists of adding the vitamins to the TPN, mix well and then priming (replacing the air in the tube with TPN) the tubing attached.
We then spike the Omegaven and prime the tubing for this as well. After setting up the "Y" extension and priming with saline we connect it all together and we are now ready to hook her up.

Since Omegaven comes in a nice glass bottle not really made for travel, we put Juliana to bed first and hook everything up upstairs. Typically she stays in her crib till the Omegaven is done and then we bring her back downstairs for the day. Her feeding pump and TPN pump fit nicely into on backpack. We use the bag sent for use with the feeding pump. The rear compartment is meant to hold larger feeding bags, but we use it for TPN. Having both in one bag makes travel in and out of the house much easier.


This is the feeding pump in the front compartment and her TPN and pump in the rear.

Since Juliana has become very interested in all her tubing we have to hide everything from her. The blanket trick has been working pretty well. We keep everything under the blanket and then tucked behind another blanket rolled up along the side of the crib. By the way this is Juliana about two minutes after being put in her crib (if only it was this easy to put her big brother to bed)
She is also on oxygen 24/7. We have on big liquid O2 tank in the living room and we use a 50' extender. With the extra length she can go any where in the house including the outside porch. We have two monitors, one for upstairs and one for downstairs. The cable is long enough that I can have one on my night stand at night. The alarm will wake us up and not the kids. When traveling we have refillable portable tanks, but I also make sure to keep a back up cylinder in the car. Since we travel pretty far from home at least once a month, I like to have a security blanket with me.

Over time I have discovered that being prepared is number one when it comes to ostomy care at home and on the go. I try to always make sure that we have the supplies we need ready to go at a moments notice (sometimes all you get is a moment). Right now ostomy bag changes are a daily event and we are still trying out different bags to see which will give us the most wear time. I have been successful with minimizing the amount of time it takes to change an ostomy bag. I keep a few sets of bags and barrier rings cut and ready to stick for a quick change at all times. This has become very important now that Juliana is maturing and moving all over the place. If it takes too long to change her bag Juliana will surely make a poopy mess all over the place and with a Broviac line that is prone to infection that is the last thing I want to happen.
We do have a lot on our plate when it comes to Juliana and I have to remind myself of that sometimes. Not every day is perfect but we do the best we can to make the most of it.
Tomorrow we head up to Boston for our monthly clinic. My fingers are crossed that all will go well. Since surgery is tentatively postpone till at least next spring, our goal from now until then is to stay hospital free. So many prayers will be needed.

Friday, July 24, 2009

No News is Good News

So the past few weeks have been pretty uneventful. We went to our clinic visit in Boston yesterday and of course my anxiety level was up. It's so hard to know how those labs are going to turn out. It's usually when everything seems pretty normal that we end up with an abnormal result. We left the clinic with the understanding that if her electrolytes were out of range they would call me on my cell and we would take her to Yale.

Well no news is good news and everything was in normal range. We made it home last night without a phone call. They did however call me this morning to discuss some changes. Juliana's lung disease causes the doctors to be a little nervous about increasing the volume on her TPN. If she gets too much fluid it can overload her lungs, but if she doesn't get enough fluid she will become dehydrated. Her urine output has been on the low side lately and she has gained a bit of weight this month (yeah!), so they have decided to increase the volume again. She will have labs drawn again in two weeks to see how it all goes and of course we will be watching her very carefully as usual. Next week we will also see her pulmonologist which will be just in time with all of the changes.

If she tolerates the volume increase we will be able to cut back to 18 hours of TPN down from 19 hours. I am hoping that by the end of the year she will be on TPN for 12 hours. Now that she is moving around it would be nice to have one less thing for her to get tangled up in. If she can get off oxygen by the end of the year as well we would only have the feeding tube in the daytime. Right now she has so much I couldn't even imagine how tangled she would get if she were crawling and cruising. When her therapist comes for her exercises I try to eliminate as much as I can (like unpluging the monitor and stopping her feeds) and we still end up tangled.

She is still working on her rolling. She manages to roll on to her belly but gets really frustrated. She isn't holding her head up while on her belly. I think that once she is able to support her weight on her arms and upper body that the belly to back roll will come easily. Juliana has also taken an interest in the little stuffies she's been collecting since birth. She especially likes her Zoe that she tosses around. If you hold Zoe up and make her dance Juliana starts to laugh out loud. It's the greatest sound in the world.

All in all things are going well on the health front. We are still recovering from Omar's layoff last month but he's back at work now and we are making the best of it. I did enjoy spending weekday mornings in the office over spending late afternoons and Saturdays in the office, but we do what we have to do to make it work. We are blessed to have employment at all in the current economy so I take none of it for granted.

Hopefully life will continue to be uneventful (at least until our next planned surgery).

Sunday, July 12, 2009

Happy Birthday!

We made one year and what a long journey it has been. These last few days have been bitter sweet as I remember the events of this past year and how it all started. Fortunately I can focus on the sweet part and have finished beating myself up over the why.

Juliana had a quiet birthday at home. Her brother just had his birthday party the week before and that was enough excitment for all of us. She is now rolling from back to belly but gets very upset because she can't roll belly to back yet. It's pretty funny to watch her do a full roll and then start screaming and kicking her legs up. We have been showing her how to roll back to her back but she just gets too upset. She also has a new interest in pulling on her line (not good at all). I knew this day would come so we are taking many precautions to hide the line to prevent her from pulling it out. It's just really hard to hide and keep it away from the diaper area to avoid infection. I made a sleeve that velcros around the line to keep it out of her site. Hopefull this will deter her for a while.

I think we may be getting teeth soon or at least I am hoping. She has taken a disinterest in her bottle feeds which isn't the end of the world because I have two other ways to give her nutrition (NG tube and her central line). It is however frustrating because ultimately our goal is to have her get all of her nutrition by mouth. I was always so thankful that Juliana didn't have any oral aversions from her lengthy intubations. I am hoping that the reason for this sudden disinterest is that she teething and that she will soon get back to her old bottle gulping self. She is however taking her cereal just fine. She is only taking 1/2 a tsp with formula but the belly seems to like this so we will stay here for a while.

I am not sure if I shared the news of Juliana's hearing loss. It was a bit hard for me to swallow. I am not really sure why because hearing loss isn't nearly as life threatening as chronic lung disease or short bowel syndrome. Juliana has profound hearing loss in her left ear and severe loss in her right ear. At least I can stop telling little Omar to turn the volume down when he is playing his keyboard. She is scheduled to be fitted with an amplification device that will basically turn up the volume for her. She can hear noises that are classified as extremely loud but can't hear noises that are very loud like the vacuum cleaner, alarm clock, or heavy traffic. So this also means that my family will have to become tri-lingual and learn sign language as well as spanish.

Overall things have been pretty normal for us which is more than I could ever ask for. There are some things on our list of summer activities that we have to be very careful about like going to the park or the beach or taking a walk. The weather has been warming up which makes it a little harder to bring Juliana out. She is really crabby when she's hot and we also run the risk of dehydration. I have been in search of a baby sun tent so that we may be able to spend the day outside and still keep her comfy out of the sun. Fortunately it doesn't seem like it's going to get too hot this summer.

I have some videos and pics of Juliana rolling and laughing that I will try to get up soon. It was pretty hard to get her on camera because as soon as I pull it out she stops what she is doing to look at the camera. She is turning into such a character and we are so blessed to have her in our lives.

Monday, June 22, 2009

Rolling!!!!

Finally Juliana has begun to roll. It's not a full roll, but it is definitely a roll. We have been working on this for quite a while. We first started with getting her interested in her feet. I was trying to get her to grab them with her hands since she adores her hands. She never really grabbed them but did spend a lot of time looking at them and kicking around in her new bouncy seat. One day during diaper change as I am trying to empty her ostomy bag she decides to roll to one side about 60 degrees. I was super excited to see her roll but not very happy with her timing. She seems to favor her left side (of course because the bag on the left usually makes the most mess) but recently has been exploring both sides. Our new goals are to make that 60 degree roll a 90 and then a 180. We have also been forcing her to spend more time on her tummy not sleeping. She usually cries and we try to make the best of it. She still is unable to lift her head and push her upper body up with her arms but we will get there one day. She has been very happy and enjoying her brother so much.




I have been carefully watching her urine output as it has slowed down a little. She had a little increased stool output after we started her on rice cereal once a day. It's really hard to tell when enough is enough. We stopped the cereal for now to let the stool output get back to normal volume and consistency. She's not over stooling but it is slightly increased which may be why her urine has decreased. This is exactly why I refuse to make multiple changes with Juliana. She is so sensitive to change it would be hard to tell what caused what. At least I can take one step back and then try again. In a couple of days I think we will try the cereal again but maybe only a 1/2 tsp. instead of a full one.

Tuesday, June 16, 2009

Boston to Yale to Home

So we went up to Children's in Boston for our regular clinic visit. Everyone was amazed to see Juliana. After hearing news about Juliana being on ECMO, many people thought that would be the end for Juliana. Fortunately that was not the case and Juliana is back and better than ever (so I thought). The visit went as usual and Juliana was fairly content after having her afternoon bottle. We discussed increasing her continuous feeds to a rate of 10ml/hr since she was doing very well at 9. After that we were granted permission to start Juliana on some rice cereal mixed with formula and maybe introducing some stage one fruits and veggies. We met with the infection control nurse and started a new ethanol protocol in an effort to decrease the chance of future infection in the line. It seems the surgeons want to wait a little bit longer than I had anticipated for reanastomosis. I actually like this idea better because Juliana will only get stronger with time and the stronger she is the less recovery time she will need. Her lungs are still very weak and will need time to mature. Since we had such a late appointment I decided to hit the road rather than wait for lab results to come in.

Of course this is the time that I get a call on the way home from the hospital. I looked at the caller id and said "oh no". I just knew it was going to be bad. The first question they ask is "how far away are you?" Once again her sodium level was dangerously through the roof. They asked us to come back and I immediately thought back to the last time this happened and all of the driving back and forth from Boston in the middle of the night. Trying to stay awake while driving the rest of the family back home after a 2 am admission to the floor from the ER was just not something I was prepared to do again. I was already half way home and decided to drive straight to Yale where her sodium levels could be safely brought back to normal and I wasn't risking my life driving home in the middle of the night and leaving my baby alone in the hospital for the night. My husband met me along the way, brought me an overnight bag and took the family back home so I could continue on to the ER with Juliana.

We made it to Yale went through the whole admission process which went pretty quickly considering the crowd that was present in the ER waiting area (which I never even sat in). The quickly set up up in a room and then the waiting began. I turns out Juliana has strict orders for no room sharing whenever we are at Yale. I particularly like this idea but it makes it hard to find a room when the pediatric floors are full. We eventually made it upstairs but this time in 7-2 with the school age kids and not 7-3 with the other infants and toddlers. At any rate the attendings at Yale are fabulous. They called Boston first thing and the nutritionists from both hospitals worked together on a new TPN order. I like going to Yale because everyone is so willing to follow Boston's protocols and they really keep me involved in the process. The other big reason is that it is much closer to home.

After re hydrating Juliana and getting her sodium back to normal, they started her up on her new TPN, did some follow labs, and we were headed for home on Sunday. While in the hospital we had some visitors from the PICU and 7-3. It turns out the Juliana has really made a name for herself at Yale. Hopefully this will be our last visit to the hospital till surgery time. We really need to tip the scales. She has spent more of her life in the hospital than at home, so our goal for the next year is to turn those numbers around. I am hoping my next post will be about something a little more mundane like sitting in a high chair.

Saturday, June 6, 2009

Going to the Park

So today was my first attempt at bringing Juliana and her brother to the park on my own. Well things didn't quite go according to plan. I arrive home from work ready to go and Juliana's ostomy bags are leaking. So I strip Juliana down and begin changing the bags. While changing her bags Juliana is seeing how crazy she can make her mommy by pulling her nasal cannula down to her mouth and then sucking on it. I put the mittens on her and she is still pulling her cannula. Stuff the mitten with cotton balls and somehow she is still managing to pull her cannula. I then cut circles out of cardboard and stick them in her mittens. Juliana is so determined to suck on her cannula that she chews the cardboard through her mitten making it soft enough that she can get her fingers over the top and pull her cannula again. In the meantime big brother, Omar, decides now is the time to have a meltdown. By the time I get the ostomy bags secure and change her clothes, she is screaming her head off and still fighting me for the nasal cannula. Omar finally settles down and three minutes later this is what I see.



So much for going to the park. I guess I will just have to try again tomorrow when daddy is home.

Thursday, June 4, 2009

Home at Last!!!

So we are finally home and getting back into the swing of things. The first night went very well. Everyone was very excited to have our baby back at home. Her brother couldn't stop giggling when we picked him up and he saw his sister in the car. I could tell Juliana was happy to be back at home when I put her to bed and she smiled and went right to sleep. She spent quite a few nights in the hospital fighting her way to sleep, so it was nice to see her comfortable again.

Juliana is stronger and definitely bigger than ever. She is talking (well baby talking) a lot now and her voice is so strong. She still is not sitting up or rolling but we keep up with our exercises. We are trying to get her interested in her feet but she is still mesmerized by her hands. It's so hard to believe that almost one year ago we started this journey. As she becomes more aware I begin to worry about how all of this is going to effect her in the future. I hope that we will be done with the long term hospitalizations soon. We have one more surgery to go which is causing some anxiety for me. I don't know if I can take another month or two in the hospital but the reality is that I have no choice. She needs to have this surgery or she will never get off TPN and be able to eat like a normal child.

Fortunately her lungs sound great. They actually are the best I have seen/ heard in her whole life. Too bad it took 12 days of rest on ECMO to do the trick, Now that we are home I am able to wean her oxygen and she is doing fabulous. We are taking it slow with only one wean per day and her oxygen sats remain in the high 90's. She is still grabbing on to her cannula and pulling it away from her nose whenever she can. When she does do this her sats drop into the high 80's which makes me very hopeful that she can come off the oxygen within the next month or so.

Now that Juliana is out of the hospital everyone wants to see her. We went to her pediatrician on Tuesday morning and will see audiology on Monday and then off to Boston on Thursday to see what our team thinks and what steps we are going to take next. I am thinking surgery probably in July or August, but her surgeon is unpredictable sometimes so we will have to just wait and see what he thinks.

Thursday, May 28, 2009

The Door is in Sight

Well as her pulmonologist put it today, we can see the front door and are just knocking down all the obstacles in between. She is so close and we are all shooting for Monday. We moved to the floor last Saturday and I must say that I was very impressed by the whole staff on 7-3. The nurses were very attentive and took the time to learn about Juliana and her history. The doctors came into the room and were very interested in hearing my take on the whole situation which is not usually done. In most instances the docs come in say this is what we are going to do and that is that. This usually causes anxiety for me because not everyone understands the big picture with Juliana and more importantly their plan doesn't include all of the details that I need to hear. I am often told that not every parent wants to hear all the fine details. Someone must have given them the heads up. They came in and said let us know what you want to do and it was done.



While in the PICU we met a wonderful intern who has simply amazed me. When she gets the ball she runs with it. She took the time to call Boston and coordinate labs and TPN orders. We are fortunate that she moved to 7-3 on Tuesday. She knows Juliana very well at this point and is very efficient at everything. She doesn't miss a beat and communicates very well with me which is most important.

Today we stopped the ativan and decreased the dose on the morphine. She is tolerating the weans very well and has no signs of withdrawal. We did however have an incident with one of the stitches being pulled from her line. This caused a small superficial wound that began oozing a few days ago. This invites Surgery and Infectious Disease back into the picture. The big concern is that we are running out of access options for Juliana so this line is to be protected at all costs. It's not just a central line, it's our life line. ID wants to pull it and Surgery says no way (as do I). Blood cultures were drawn from both the line and her body. So far all results are negative, but the site is still oozing. Dressing changes are ordered daily till this clears up and she is back on antibiotics. The attendings don't feel like this will prevent her from going home. We can continue to give her antibiotics at home and monitor the situation. The ultrasound and all the lab results lead us to believe that this is not a line infection nor an abcess.

We are now in the process of getting her TPN order into the pharmacy for Monday delivery. We are narrowing down the home meds and readjusting according to Juliana's needs. Also on the agenda is the hearing screening which we have attempted twice unsuccessfully. The hope is to get her hearing tested and her seen by pediatric opthamology before heading home so we won't have to do it out patient. We are all so ready to get her back home again.

Thursday, May 21, 2009

On our way....

Juliana is fabulous. She is very happy and back to herself. It's hard to believe that she was just on ECMO a couple of weeks ago. She was extubated a couple of days ago and should be on nasal cannula by tomorrow. She is currently on high flow at 3 liters and if all goes well we will be moved to the floor in the next couple of days. Of course I argue that if she is well enough to go the floor then she is well enough to go home. Once she is on nasal cannula there isn't anything that we don't do or can't do at home.
So my goal for the next few days is to break Juliana out of the hospital. I have had enough of the hospital and it's not that I don't appreciate them saving Juliana's life again. It's just that she has spent more of her life in the hospital than at home. I also have big trust issues. It really takes time for me to feel comfortable with the staff at any hospital. Moving her to the floor would just mean more staff that I have to train. I think when you are the parent of a very sick kid you have a different view of the world. I am the biggest advocate for my daughter and I will protect her at all costs. Sometimes it means typing out instructions for her care and posting them over her bed, talking with the nurse managers about what I expect from the nurses and badgering the doctors to answer questions about why, what, when and what if. I just can't sit back and let them handle everything. I have to be involved in everything from the smallest change to the biggest and if something slips by me like a change in medication my anxiety goes way up. I just might go crazy if we don't get out of here soon.


While inpatient at the hospital we were able to get a few things done. She was due for her eye exam while she was on ECMO, so I wasn't quite able to bring her in for her check up. I finally was able to arrange for the retina specialist to come see her while in the hospital. So she had her exam yesterday and the traction on the right retina is gone. We are scheduling a visit with a pediatric opthamologist because she will most likely be nearsighted and will need some vision correction. The retina specialist also recommended that Juliana be fitted for a special contact that will trick the orbital bones around the left eye to continue to grow. Since she has no vision in the left eye, the eye most likely will not grow and therefore the bones around the eye will not grow. Although this is only a cosmetic issue I think if it's something we can fix we might as well. Today she should be seen by audiology again. Now that she is extubated they will be able to test her more accurately. Initially they had found that there was some high frequency hearing loss on the left but the test was inconclusive because there was not enough data to compare. I am hopeful that the initial thoughts were inaccurate. Despite everything she is happy and smiling and charming the pants off everyone who sees her. Mama is so proud of her little girl.

Thursday, May 14, 2009

Pictures

Okay so I said I wasn't going to be taking any pictures but I did. I feel that it's important for Juliana to understand what she has overcome so early in life. The first picture of her looks terrible but she is much better now.

This is ECMO. It is a very big production with lots of pumps that I didn't capture in the picture.




This is Elroy. Elroy is the CVVH machine that was used to help remove fluid from her blood. All the CVVH machines are named after the Jetsons. I would have preferred Rosie so I could take her home to clean my house.





In this picture you can see the CVVH on the right and the ECMO on the left. The CVVH was connected directly to the lines of the ECMO. The oxygenator is the white tube in the middle that looks like it's about to launch and Juliana is on the warmer behind all of this.






Now here is a not so pretty picture. This is Juliana two days after going on ECMO.






These are the cannulas that were surgically placed into the jugular vein in her neck.








Now here is Juliana the day after the cannulas were removed.






and here she is a few days later smiling again. She is so amazing.


Saturday, May 9, 2009

Off ECMO and lots more.....

So many things have happened since my last post. I apologize for not updating everyone much sooner but this has all been very overwhelming. She is doing much better than she was two weeks ago. While on ECMO she nearly tripled in size and had tons of fluid retention. Her kidneys were still functioning but not enough to remove all of the fluid. So we introduced a new machine to the mix called a CVVH (Continuous Veno-Venous Hemofiltration). This machine was hooked up to the ECMO circuit on the venous side (which is the blood leaving her body to be oxygenated by the ECMO machine). So before the blood would go to be oxygenated it was re-routed through the CVVH for ultra filtration (removing fluids from the blood). We were able to set how much or how little fluid was removed. In one day the machine removed 750cc of fluid. This is more than Juliana weighed at birth. It was completely amazing to see your little girl go from this huge baby that was almost unrecognizable to this shrunken baby that was even smaller than when we brought her into the hospital. Soon after all the excess fluid was removed her left lung opened up and then shortly after that her right lung began to open up as well.



Since she had lost so much fluid the endotracheal tube placed to assist in ventilation now had a huge leak. You could actually hear all the air escaping and resonating in her nose and mouth. So now we were faced with the dilemma of an inadequate tube for ventilation and Juliana was in a position that made it nearly impossible to replace the tube safely and there was no way to move her into a position that would work without the risk of the ECMO cannula becoming displaced. The only other option left was to do a bronchialoscopy to safely replace the tube. So the new larger size tube is threaded onto a long thin scope (camera) and sent down alongside of the tube already in place. This is the first time I actually saw the inside of Juliana's lungs. Overall she has a great airway and vocal chords. Her right upper lobe has been problematic and the pulmonologist was able to suction out a nice chunk of mucus. The tube was replaced and a trial run of ECMO was done later that night.



On Tuesday May 5th she was scheduled to come off ECMO and since the trial run went smoothly the night before everything went according to the plan. She had a great first night of ECMO. Her blood gases were amazing and everyone thought she would be extubated the next day. Some changes were made to her ventilator settings in an effort to wean her off for extubation. Her blood gases weren't looking so good any more and she started to require more oxygen. Another chest x-ray confirmed that there was some atelectasis (collapse) on the right side again. Yesterday she had another bronchialoscopy done to try and reopen the right upper lobe. Her pulmonolgist was able to remove some mucus from that area and it seemed pretty open but the x-ray following the bronchialoscopy still showed that the lobe had not opened up yet. The x-ray however can be deceiving because in order to clean out the lobe, saline is sent down the tube to loosen things up for suctioning. So it is still possible that the lobe opened up but we are just not able to see it yet.



She is back on her formula again after two weeks of an empty belly. We started her off very slow with only 2cc per hour and gradually increased to 6cc as of yesterday. Her belly was feeling a bit firm to me which really concerns me. I asked to the doctors to hold at 6 to see what she does before moving on to 8. She has some but not a lot of bowel sounds so I don't want to overwhelm her with too much too soon. She has gone through a lot in the last two weeks and not all of her bodily functions are up to par yet.



She is definitely starting to feel better. I was able to get a little smile out of her yesterday but it was the kind that only I can see through her eyes. She is very perceptive and extremely expressive in her eyes especially now that her sedation is being weaned. She has a little more awake time than before but still spends the bulk of her day sleeping. While on ECMO and the CVVH she was on extreme amounts of pain meds. To avoid withdrawal symptoms she is slowly being weaned to a dose that is more suitable for her weight.



I have lots more to talk about but I will save that for later. Thanks again to everyone for all the prayers and support. It's great to know how much people really love and care for Juliana.

Tuesday, April 28, 2009

Not getting any worse....

So the good news of the day is that Juliana is not getting any worse. The swelling is getting better but she still has a lot more peeing to do. She is off the high blood pressure meds and is now on Dopamine for low blood pressure. She is oozing out a lot of blood from her cannula site and there is not much to do about that. The only thing we can do is to keep replacing the lost blood with more packed red blood cells. To date we have 48 hours with no growth from the blood cultures. This doesn't necessarily mean that the bacteria is gone but it is at least surpressed by the antibiotics. Her pulomonogist came by today and heard a couple of deep breath sounds. She is still no where near ready to come off the machine but breath sounds means that we may be on our way to healing now. I just hope that she can stay on the machine long enough to heal before her brain starts to bleed.

I am happy with her progress but there are still many concerns. The blood loss really worries me but I know that she won't bleed to death because we are able to just replace whatever blood she has lost. Unfortunately she can't be moved and has to lay in the pool of blood that is forming underneath her. The nurses and I are doing everything we can to keep her clean without moving her but it is very hard.

She has a great team of doctors attending her right now but it is very difficult to keep a close eye on her when they are 7th floor and we are on the 4th floor. Hopefully her lungs will make a speedy recovery and we can get off the ECMO within the next week and back to the 7th floor. Nights have been hard without her home. I still wake up in the middle of the night to check on her and she is not there. At least when we go back to the PICU I can stay with her at the hospital.

Saturday, April 25, 2009

ECMO

So here we are back at Yale in the worst condition I have ever seen Juliana. She is on ECMO (extracorporeal membrane oxygenation) which is a process of oxygenating blood outside of the body. She has swelled up quite a bit and is almost unrecognizable. Her head is very big because when they went in to cannulate her veins there was a bit of trouble. The preferable location to cannulate would be the main vein and artery on the right side of the neck. This is the same location that her Central Broviac line was placed and unfortunately the vein on that side has some stenosis or narrowing. This makes this vein not a eligible for cannulation for the ECMO. So next they went to the left side of the neck. The surgeon was successful at placing to cannulas on this side. The down side is that the two major veins that drain blood from the head and brain are now either occupied or too damaged to function. So the smaller veins in the neck will have to learn to pick up the slack so to speak. This however is going to take lots of time. There are some major risks associated with this issue. The first which is a major risk with ECMO is bleeding in the brain because of all of the heparin that is used to prevent clots in the blod running through the machine and the cannulas. The second is clotting. With a lot of blood settling in the brain because there aren't enough large exits, we face the issue of the blood that is there waiting will form clots. So our very creative surgeon decided to place a third cannula to act as a large vein to allow blood to exit from the head. This was successfully placed yesterday with no complication. Unfortunately there is already a lot of swelling in her head and this will not change that. It will however prevent this from getting any worse. Over time the swelling should go down but it will take lots of time. We anticipate that she will be on the ECMO machine for at 2-3 weeks. The goal is to give her lungs ample time to recover and then slowly wean her support from the machine.

I wont be posting any pictures. She has double in size and it's not pretty at all. Somehow I am able to look past everything that is going on with her but I know for others it's just not the same. My husband is still having a hard time seeing her this way. She is back at in the Newborn Special Care Unit at Yale so we know a lot of people there and they all remember Juliana. It's nice to be surrounded by so many people who know and love Juliana. They have seen her through the toughest moments in her life. I guess it's only fitting that we would be back in the same unit. Once she is off the machine however she will return to the PICU. Under normal circumstances she would not be allowed back in to NBSCU but because there is another baby already on another ECMO machine we have to be on the same floor. This is mostly because of logistics. ECMO is a pretty big production and requires a perfusionist to be at the bedside 24/7. She is being monitored by the doctors of the PICU but some of her old doctors are still chiming in on the situation. They all really work well together which gives me great hope. I feel like I have been the coach and the moral booster for the team. Through all the concerns and fears the doctors have I still feel in my heart the Juliana will pull through this. I know what she is capable of and that she has beaten all the odds time and time again. So when they say that there is a 50% chance that she won't come off the machine and will not survive, I see that glass half full. There is a 50% chance that she will come off the machine and survive. She is no ordinary kid and I spend a lot of time reminding people that she is as strong as strong gets. She goes down quick but always gets back up. She will get through this.

Thursday, April 23, 2009

Back in the ICU

Juliana is back in the hospital. This is the sickest I have seen her in a very long time. I never thought that I would hear someone say to me that she might not make it again but here we are. She has an infection from what we can tell thus far. The infection is causing her other organs to fail. She is intubated again and back on the high frequency oscillator with nitric oxide. It is set to very high settings and if this doesn't work we may end up going on ECMO (heart lung machine). Everytime she wakes up her sats drop and her heart stops so they are keeping her sedated and paralyzed. She doesn't look god at all. I really wish I had something good to say but i don't. I will try to post updates on her condition as much as possible. Please pray for my Juliana. She had come so far to lose her now.

Friday, April 10, 2009

A Holiday at Home and a Little Clarification

Finally Juliana will be spending a holiday away from the hospital. Every holiday since she was born has been spent in the hospital, so when we went to clinic yesterday I was almost positive that she would be admitted again. Juliana didn't sleep the whole way up to Boston so I knew she would be so cranky and she was up until the moment that her one of her doctors came down to the cafeteria to tell us that her labs came back normal and we could go home. I put her down in the stroller so that I could eat and she was just grinning from ear to ear. It was like night and day. I know she really doesn't understand what is going on but I think the stress that was lifted off my shoulders must have signalled something to her. She went to bed last night and woke up this morning with that same happy smiling face.




It will still be a couple of months till she is ready for surgery. She really needs to get over her respiratory illness and hopefully off oxygen before she will be ready for surgery. She is continuing to grow but at her own pace of course. The doctors would really like to see a boost in her weight gain. We really don't want to get her too far behind so once again we are going to increase the calories on the formula and the concentration on the TPN. I hope this works. It's really hard to tell people how old Juliana really is when she wears newborn clothes. For her actual age she should be almost twice her size in weight and for her adjusted age she is about 5 pounds shy of the average. Regardless of what the charts say though we are just happy she is growing. I am very positive that after her surgery she will start packing on the pounds.

For those of you who may not really understand, Juliana lost quite a bit of her intestines (about 22cm) 7 months ago. She had a disease where some of the tissues in her intestine had become necrotized (or dead). These tissues had to be removed and she was left with about 20-30 cm of intestines. When we eat we use the whole intestinal system to process foods and absorb the nutrients we need to live and grow. Juliana's intestine we left in three pieces. She uses a very small portion of her intestines to process her formula and the rest is unused at this time. She receives a very elemental formula which is what they call predigested. It is amino acid based so the stomach doesn't have to work as hard to break it down. Even with this predigested formula she is still only able to take a tiny amount at a time.

She has two ostomies, a jejunostomy and an ileostomy. Each ostomy is a part of the intestine where and opening was created and brought to the surface of the skin. We use an ostomy bag to collect waste from these openings. She doesn't poop from her rectum. When she has her surgery the ostomies will be reversed (reanostomsis). Everything will be put back together and she will have one continuous digestive tract. She will also get a G tube for feeding which is a tube that is placed into the stomach through an incision in the abdomen. We are very happy about that because she won't need her NG tube anymore. The NG tube is the yellow tube you see going up her nose. This tube goes up her nose and then down into her stomach. She loves to pull this tube out which means I get to fight with her to get it back in and make sure it's actually in her stomach. With the g tube we can avoid those battles and see her pretty face without all the tape.

I took some pictures so you can really see what she has going on. When she first had her surgery it was all very overwhelming but now it's pretty normal for us. I have to remember though that it's not normal to everyone else. I hope this makes things a little clearer.
We put protective barrier shields around the stomas and then stick the bags on. The one on the right is prolapsed and looks larger but the one on the left puts out the most stool. I ocassionally take pictures to monitor the conditions of her stomas and the skin around it. She has a little bit of skin breakdown on the right side of her left stoma which you can see above.
Here are some more pics just of Juli and her brother Omar hanging around the house.


Juliana with her cousins.




Wednesday, April 1, 2009

Another Visit to the Hospital

As much as I wanted to go back to Yale to visit all of our friends, I really didn't want to do it this way. Juliana started off with what seemed to be just a slight cold. She was a bit congested for a few days but her lungs sounded clear, her work of breathing hadn't changed and her oxygen requirement remained the same. Sunday morning she her oxygen sats began to dip into the high eighties low nineties so we turned her oxygen up a bit. It was not uncommon for Juli to require a little bit more oxygen with a cold. Well a little bit suddenly turned into a lot more. We were able to keep her saturation levels in the 90's but her oxygen level went from her normal 1/8 of a liter to 2 1/2 liters. Her work of breathing began to increase and she was just irritable. All I could think was RSV and in the hospital for weeks. It's like I have PTSD. The moment I think of going back to the hospital my eyes well up. Despite my aversion to staying in the hospital I knew that if I didn't bring her in things would only get worse.

So we brought her into to the ER and they took several chest x-rays. The first thought after looking at the x-rays was pneumonia but fortunately after a second look it was confirmed that she had a slight collapse in her right lung. A collapse is much easier to get over than pneumonia although still not fun at all. She also was positive for para flu which is a respiratory virus. We spent two nights in the hospital and we were on our way home. She is still sick but we can treat her symptoms at home and it is much more comfortable for the both of us. After this I am sure that we will not be having surgery this month or next month either. Fortunately we can wait

Everyone was surprised to see how great Juliana looked since she was still on TPN. I blame it all on the omegaven. If it weren't for omegaven we would be shopping for a liver right now with a very sick looking yellow little girl. We are so grateful for Children's Hospital Boston and everyone on Juliana's care team. They really go out of their way to look out for her best interest.

Monday, March 16, 2009

Update with Pictures (Finally!)

Juliana is doing fantastic. She finally got her synagis shot after weeks of phone calls to the doctors office, insurance company, and the pharmacy. Her pediatrician finally received the novel of medical records from both hospitals and it seems like everything is falling into place. Her pediatrician and the nurses there really understand what it means to be a micro preemie and offered us VIP treatment at our last visit. I was really worried about bringing her into the waiting room with all of the sick germs floating around. She was 2 weeks late for her shot and I didn't want to chance anything. They offered to let us in through the back door and put us right into a room when we got there. No waiting room but still lots of waiting (not uncommon). She got her shot, a set of vitals, weight and height check and we were on our way. I was very happy about her weight she grew about 5 ounces in a week and is now 8lbs 12 oz. She has been tolerating the increased oral feeds so far and I am hoping that we may be able to increase her rate on the continuous pump feeds. We will see what happens at our next clinic visit on the 26th.
She also has a pulmonolgy visit next month but I am hoping that we can make it sooner. I have been testing her by turning the oxygen off for a little while to see how she does. At this very moment she has been off the oxygen for almost thirty minutes and hasn't dropped below 95%. When I first turned it off she was sleeping. About five minutes ago she woke up and her saturation level hasn't dropped below 97%. I am very hopeful that we can get her off the oxygen very soon. I know that with her off oxygen that her surgeon will also be ready to go in and put her back together. This is something I am looking forward to but at the same time I am afraid to put her through surgery again. Life with Juliana is unpredictable and I don't know that everything will go according to plan with this surgery. All I can do right now is enjoy the time we do have together and hope that all will go well.

Here is Juliana in her swing and big brother, Omar, on binky patrol.


Daddy and Juliana cuddling on the couch for the first time on the day she came home from the hospital. I love her homecoming dress.

Hanging out with Mommy

Juliana's favorite activity.... starring at her hands.

Sunday, March 8, 2009

Still at home but not for long...


Juliana is doing fantastic at home. She actually grew about half a pound in the last week. She enjoys her physical therapy each week and overall is just amazing. She is spending more time awake and socializing. She went to the eye doctor last Thursday and all seems stable for her right eye which is our only hope right now as the left retina is completely detatched. We have really adjusted to life with her home, but it will all be changing when she goes in for surgery. The last time we spoke with her surgeon he felt that she would be ready for surgery in April. With the way she has been progressing I think he is probably right.


As much as she needs to have this surgery to get her gut back to normal (or close to normal), I am dreading having to go back to the hospital and deal with all the after effects of surgery. The all over swelling from anesthesia, the pain meds that make her drowsy, waiting for the stitches to heal, starting feeds all over again, dealing with nurses who think they know my child better than I do, etc. I just can't get it out of my mind. I just wish we could fast forward from the time of her surgery til the day she is discharged. I am just going to be an emotional wreck during that whole time.

Friday, February 27, 2009

Just a Day Trip

I was so worried about our visit to clinic today, especially after our last visit which ended with us spending another weekend at the hospital. So in preparation for our visit today I packed weekend bags for the both us. My thinking was that if I was prepared to stay then they would send us home. I am not sure if that really was the trick or not, but we are back home after only a day trip to Boston. It was a really long day mostly spent waiting for lab results but there was no way I was getting back in my car to head home unless I new for sure that everything was okay. We waited for almost three hours for our lab results. Fortunately we did hang around because the first sample that was sent down was contaminated with TPN and the sugar count came back way high. They drew another sample and everything came back perfect.



Short bowel is something that I never even heard of til Juliana. It's a very complex situation that tends to absorb me mentally, mathematically and most definitely emotionally. I found myself in tears the night before clinic wondering why. Why can't Juliana eat like every other baby? Why is my child screaming for a bottle and I can't give her one? Why do I spend my days and nights thinking of poop and urine measured in grams per kilo per hour? There really isn't a good reason explain why we are here in this situation right now. I don't know why Juliana was born so early. The doctors don't know why my water broke and this is what makes this even harder. Is there something that I could have done differently to prevent this? Each time I ponder this question I come up with the same answer. No.

While I can't stop my mind from wandering every once in a while, I can remind myself that this couldn't have happened to a stronger kid. Juliana is the strongest person I have ever known and because of her I am a better, stronger person. I have learned more about life and medicine than I could have ever learned in a text book. She has changed my whole outlook on life and for the better. I am so glad to have her in our lives regardless of the stress, sleepless nights, financial strain, messy ostomy bags, feeding tubes, etc. She is our little miracle and I couldn't imagine living a day without her.

We are so glad to have her home and even more excited that we don't have to go back to clinic for another month. (Yeah!!!) We do still have to go back next week for another visit to the retina surgeon, but that trip won't be as stressful as waiting for lab results. Please continue to keep Juliana in your prayers. We are so grateful for everyone who has supported us through this journey and I know you all keep a little piece of Juliana in your hearts.

Saturday, February 21, 2009

Another Weekend at the Hospital

So I thought I would never spend another weekend at Children's Hospital again. Well I was wrong. We went up to Boston last Thursday the 12th and everything seemed to go well. We made in time to the eye doctor and after hours of waiting he said see you in a month. Sounds great to me. We finally get to Clinic. More hours go by and lots of visitors stop by to see us. We have our visit with her surgeon and the team. Everything looks great. Let's increase the feeds see how she does, and we will see you in a month. Sounds great til we get about half way home and I get a call on my cell from the hospital. It's Juliana's surgeon. He says I hope you are not too far from the hospital because we need you to bring her back. Just before we left they drew some blood for her usual labs. This time her electrolytes came back way out of wack. Her sodium levels were very high and they needed to get this under control. So we turned around and back to Boston we went.

So when we finally get to the floor every one says she is only here for a couple of days and then we will send her back home. They just wanted to get her levels back to normal and adjust her TPN. I didn't believe them. For some reason I just couldn't believe that a couple of days really meant a couple of days. After so long in the hospital I just couldn't imagine only staying for the weekend. What was comforting was to be on a floor where I knew all of the nurses and they knew us. I just couldn't imagine having to go through the getting to know you phase all over again. I talked with a few of the nurses on the floor and they talked me into believing that we were only there for the weekend. They hydrated Juliana for a couple of days, put her back on an adjusted TPN, drew labs almost every 8 hours and finally we were cleared to hit the road. At least heading home this time was not as nerve wracking as it was the first time. We brought her home on Monday and our new TPN showed up just in time.

So far it's been smooth sailing, except for an ostomy bag incident we had a couple of days ago. I had to change Juliana's ostomy bags 4 times in 36 hours. Quite frustrating since I have become quite a pro at ostomy bags. Ostomy bags with Juliana have always been challenging. We would literally pray that the bags would stay on leak free for at least 24 hours. All of the nurse would try different tricks to get them to stay on but it was seemingly impossible. Over time I eventually figured out the best way to get the bags to last. I am actually able to get up to 48 hours out of one bag. Poopy bags are just something I have learned to deal with. It's not fun but I would change them million times a day if it means having her home.

Speaking of Ostomies, Juliana's surgeon is looking towards April as the month he would like to go in and reverse her ostomies. (Yeah no more poopy bags!!!) We have a consult set up with pulmonology in April and if all looks well she will be going in for surgery. He is going to reconnect her intestines and then put in a G-button for feeding. (Yeah no more tube up the nose!!!) We anticipate that she will be off oxygen by then and at least over 4 kilos in weight (which is close to 9 pounds). I was quite surprised to hear that he thought she would be ready so soon, but the more I think about it the more I feel that she would be ready by that time. This should hopefully be her last surgery.

So for now, she just needs to grow, grow, grow.

Tuesday, February 10, 2009

209 Days Later...

Juliana is finally home. A sentence I never thought I would say after 209 days in the hospital. She came home on February 5th (my birthday!). The first night was pretty rough for us. Juliana slept through the night but I sure didn't. Between emptying her ostomy bags every 4 hours, refilling her feeding pump and the pulse oxometer going off every time she moved it was quite hard to get a good nights sleep.

Almost a week later we are settling in and everything is going very smoothly. We have a visiting nurse that visits us once a week and an infusion nurse that calls to check on us. I was a little nervous about being home with both kids alone but little Omar is a great big brother. He has been very helpful and is always on binky patrol. Dad is getting used to working with her central line and has even set up her omegaven infusion at night. Juliana is very alert throughout the day and her cry is stronger than ever.

Tomorrow will be a big test for us. We are taking her back up to Boston for her first clinic visit. This will be the first time she has left the house since we brought her home. For the last few days I have been preparing her bags and double checking to make sure we have everything we need. I am very nervous about this trip because it will be a very long one. We have an 11 am appointment at the eye doctor in Boston and then a 1 o' clock appointment at the hospital. I am told that our first visit at the clinic will be at least 3 hours which means we will be done just in time for rush hour traffic home through Boston and then Hartford (yeah!) I just hope that we can make it home in time to put her TPN and Omegaven up at 8pm.

It has been wonderful being home with both of my children. It's the best thing ever to see how much they love each other. Now that we have settled in and have established a routine (that does not involve spending weekends in Boston at the hospital) I will try to spend more time updating everyone on how great Juliana is doing. I suspect that she will just blossom now that she is surrounded by the love her family every day all day. Thanks so much for your prayers.

Sunday, January 25, 2009

Coming Home (soon) !!!

On Friday January 2nd we had a meeting with Juliana's surgeon. He said that he didn't fell that Juliana was ready for surgery and to send her home till she was ready. This was the best news ever. On Monday January 5th Juliana's eye doctor called me and said Juliana needs another eye surgery (left eye only). Not only does she need surgery but she needs to be transferred to another hospital for the procedure. So the next day she is transferred to Mass General, spent the night on the pediatric floor, left to Mass Eye and Ear for the surgery, and was them admitted to the PICU for an overnight stay. By Thursday we were back at Children's on a half liter of Oxygen but not intubated which is great. Late Thursday evening (early Friday) she was sent down to the PICU because her oxygen went up to 2.5 liters. Turns out she caught Klebsiella Pneumonia from the intubation for the eye surgery. There goes all hopes of going home out the door. Fortunately Juliana is tough and fought through the pneumonia and by the end of the week she was back to normal (well almost normal). The pneumonia cleared but still more bad news. She had a follow up check up from her surgery and it was unsuccessful. The retina is still detaching and she may lose vision in her left eye. The surgeon is not ready to give up that eye yet but doesn't plan on doing any thing in the very near future.

We scheduled another meeting for Friday the 23rd to discuss discharge for Juliana. I was totally expecting to walk in and hear everyone say that Juliana was just not ready to go home. my insurance covers limited amounts of private duty nursing which was up for discussion even though I didn't feel it was an issue. Much to my surprise the exact opposite happened. Due to the events of the last couple of weeks her surgeon felt more confident than ever that Juliana needed to go home and wait it out. He is completely sure that she is not ready for another surgery and just needs to grow. The care coordinator felt confident enough to agree that she would receive adequate care at home even with limited nursing. So two weeks is the goal. my birthday is in two weeks so everyone is working to make sure that she goes home on or before that date. We are super excited and I finally feel confident enough to share these plans with everyone. I was afraid to say something out of fear that something would backfire and my fears were confirmed when we ended up back in the ICU even if it was for less than 24 hours.

Now she is doing very well. She is so interactive and we can't wait to have her home. It will be a very hard adjustment as she still is very fragile in terms of her immune system and does require a lot of medical care. I have been training all month (and most of her life) to care for all of her medical needs. The only thing left to do is to meet with infection control. We have been getting shipments of medical supplies for her. All of her meds have been changed to oral instead of intravenous, her omegaven now only runs at night, we have the O2 tanks to bring her home with as well as a portable monitor. We are so close but still it seems so far off. This week she will have another swallow study done to see if she can tolerate regular liquids instead of thickened liquids. She will also have a sleep study to check for apnea spells and a ph study to determine if she has a reflux issues. All of these studies are just precautionary and will better prepare us to take her home. Once these are all complete she will have a car seat test done and we should be on our way.

Hopefully there will be no unexpected events and she will come home as planned. It is very important to us that Juliana gets to live a normal (or somewhat normal life) at home with her family. She needs to know that there is more to life than the hospital. Please continue to pray for her health.
Juliana Maria was born on July 12, 2008. She is a micro preemie born at 1lb 2oz. 11-1/2 in 23 weeks and 4 days gestational age.