Tuesday, December 30, 2008

Well it's been quite a while since I have posted. Juliana is doing really well. She is up to six and a half pounds this week and looks great. She is successfully taking 8cc and hour continuous and gets three feedings by mouth a day. It's such a small amount in a large bottle but she drinks it like a big girl. It takes her about 10 minutes to finish an 8cc bottle (that's about 1-1/2 teaspoons), but she loves every minute of it.

We still don't know when her surgeon would like to perform her surgery. This is the most frustrating part of this whole experience. We are just waiting indefinitely. I am hoping that it will be soon but I am afraid that it probably won't. We did discover this past week that Juliana's bones are significantly demineralized (lacking calcium). This bit of new information doesn't really surprise me at all. Despite the fact that she was born extremely early, she has spent quite a bit of time on Lasix which tends to eat away at the bones. The x-rays show that she did have a few rib fractures previously but they are now in the healing process and fortunately that is all that they found. So in order for her surgery to happen she needs to be off the oxygen, her bones need to be stronger, her bilirubin needs to be lower and she needs to be bigger. She is definitely growing and her bilirubin has improved so much, but she still requires oxygen and it may be a while till her bones are stronger.

In the meantime we are just trying to enjoy the time that we do get to spend with her. Her big brother has become very attached and spends most of his time talking about going to Boston. He gets really upset when it's time to come home. This past weekend he told me to go home and that he would stay with baby sister. He now has his own doll with an ostomy and bag like his sister. He put tape on the dolls face so that it would look like Juliana. He feeds the doll with a bottle while I am feeding Juliana. I am so glad that he is handling this all so very well.

Thanks everyone for all your support. It means the world to us.

Thursday, December 4, 2008

Eye of the Storm

The last couple of weeks have been so hard for me. Juliana is doing great, so great that all I can think about is taking her home. As you may know we have moved to the regular medical floor while we wait for her next surgery. This is exactly what we have been doing for the past couple of weeks, waiting. It's like the eye of the storm or the crest of a roller coaster. Everything is so calm but the anticipation just eats at your nerves. You know that at any moment you will be taking the plunge and the excitment will begin. I've never been on this coaster before and I don't know when is it going to end or even what to expect next. I don't know how bad the storm is going to be but I know it is coming. So for now I am trying to enjoy the calm (which is much harder than I ever thought). We still do not have a date or even a week that the surgeon would like to reconnect her intestines. She had another study done yesterday to see what's in between the two stomas. I do not have the results yet but I am hoping that this will put us one step closer to deciding on a date at least.

She has gone up and down on her feeds this week but fortunately not stopped. She had a bit of increased output from her ostomy bag which pulled us back a few steps. She went from 8cc per hour to 4cc and then increased to 5cc yesterday. She will probably go up another cc today seeing that her output yesterday was within range. On two occasions this past week she has attempted to take a bottle and failed each time. She starts to gag and then her oxygen saturation drops. I think every four or five days we will attempt to give a bottle feed and see if she can learn how to do it. I am sure that with time she will get.

She also had an eye exam yesterday and the doctor says it seems like things are getting a little worse. There is increased traction on the peripheral of the retina. Friday a retina specialist will be in to take a look also and decided if it's time to intervene and perform retina surgery to save her vision.

Overall she is behaving like a normal baby. She hates diaper changes, baths and ostomy bag changes. She also likes to sleep most of the day with awake periods scattered in between. She loves her pacifier and gets very angry if you take it from her. She has been lifting her head up off my chest occasionally while I hold her. She still likes to pull her cannula and feeding tubes out (even if you wrap her hands up she finds a way to get at them). The hardest part is seeing her doing so well and not being able to take her home. She has improved so much in the last few months and even more so in the last few weeks. I was hoping to have her home for Christmas but that is now out of the picture and I am hoping at least before my birthday (Feb. 5th). I am really happy that she is doing well regardless of when she gets to come home and experience life outside of the hospital.

Monday, November 24, 2008

Out of the ICU

Juliana moved to a semi private room this weekend and is looking fabulous. She is able to actually leave her room now (supervised of course). She can come out to the play room and also will be able to go for walks throughout the hospital. This great because her big brother Omar loves to spend time in the playroom. Omar has been a great big brother to Juliana. He is so gentle with her and loves that he gets to hang out with her and give her hugs and kisses. It was much easier visiting her now that Omar can play and visit at the same time.

On Friday Juliana had a hearing test done. She passed on her left but was referred for more testing on her right. Just like her eyes we will just have to keep a watch on it and follow up with another check up. She has been receiving a daily diuretic for months and this can also have an affect on the hearing. Her eyes seem to be okay for now. She is showing neither growth nor improvement, so the opthamologist will just continue to check her eyes weekly. Fortunately she is weaning off the diuretic and has gone from 2mg per kilo to 1/2mg per kilo over the last month.

She is now getting 7cc per hour of Neocate and is handling it pretty well. We did make a big jump today from 6cc to 7cc and I am crossing my fingers that she will tolerate this change. It still looks like it will be a few weeks till the surgeon is ready to do her surgery. So we will probably be spending Christmas in Boston. I would much rather her home but I am more than happy with the progress she has made so far.

Thursday, November 20, 2008

One of the healthiest babies in the unit...

Juliana is doing remarkably well. It's almost hard to believe. I feel like I am waiting for something bad to happen. It's been almost four weeks since we arrived in Boston and everything is going so well. She is tolerating her feeds and is now up to 5cc per hour. At about 12cc per hour she will be considered at full feeds and will be able to come off the TPN. So we are almost half way there.

It even gets better... Juliana is off the High Flow Nasal Cannula and is now on a regular cannula. This is just a plain nasal cannula that delivers oxygen. Unlike the High flow it delivers just straight oxygen at a much lower pressure. Since she is not requiring so much support and is requiring less care she is eligible to move out of the ICU to a regular care unit. The nurse said to me that Juliana was one of the healthiest babies in the NICU and I almost cried over the phone. To hear that my child is one of the healthiest after being the sickest (not one of the sickest but the sickest) baby in the hospital was unbelievable. We have come a long way and I am grateful for everyday. I just hope we can bring her home before Christmas.

Monday, November 17, 2008

"Preemie Steps to Baby Steps"

Very early in our NICU adventure a nurse told us we would be taking "preemie steps" throughout our days in the NICU. Boy was she right. Since that day this has become my motto. It's always been preemie steps forward and then big giant baby steps back. Now I am actually feeling like we are taking baby steps. Still not very big ones but none the less they are steps in the right direction. Juliana has done a fantastic job with her feeds. She is up to 4.5 cc per hour continuous and so far has not started to dump. I feel like I am waiting for something bad to happen as that is the usually pattern but I am happy that my fears have not come true. Juliana is doing better than I ever expected.

Thanks as always for your prayers and support.

Tuesday, November 11, 2008

My Yellow Baby

Sometimes I just don't notice how yellow Juliana really is. I have been going through her abundance of photos that I have taken throughout her life and actually started to notice the progression of her TPN associated liver disease. I am so surround by Juliana and all of her issues that they almost seem normal to me. I met a little boy born 2 days before Juliana and it really hit me. I started to think about the long road that we have been traveling almost blind folded never knowing what is going to happen next. The progressions and regressions of her health have left me worn out and completely exhausted. Then I think about the "wonderful" doctor who told me and my husband that we should just abort because the road to come would just be too hard. Boy am I glad that we didn't listen to him. It hasn't been easy and we don't sleep much. We live in constant worry and sadness that our little girl is so sick. Would I go back and change the decision we made on July 10th to do everything possible to save our little girl? Absolutely not. She is the most amazing little girl I have ever met. With every challenge she perseveres and continues to thrive. Seeing her now and knowing where we came from really lets me know that we made the right decision.

Juliana is continuing to improve on a daily basis. We made another upgrade in her respiratory and she is now off CPAP and on a High Flow Nasal Cannula (HFNC). This works about the same as CPAP by delivering a constant flow of air and oxygen through her nasal passage. She started off on 7 liters on Friday and is now on 5 liters. She may within the next day or so move on to just a regular nasal cannula which will still deliver oxygen and air through her nasal passage just with decreased force. She has also started feeds on Sunday. She started off with 1cc per hour of Pedialyte. Yesterday after about 24 hours on pedialyte we switched her to neocate which is very basic easy to digest formula. She has been on Neocate since she has had her ostomies. It's been a few weeks so I am really hoping the she will be able to tolerate her feeds. Even though the Omegaven has bought us more time, our goal is to get her up to full feeds and off the TPN as soon as possible. The surgeons still have not given me a time frame that they think would be appropriate to consder her reanostomosis. So for now we will just watch how her feeds go and continue to ween on her respiratory support. She has made really good progress in the last two weeks and I couldn't be happier. We have really come to appreciate the little things in life that many people often take for granted. Please continue to keep Juliana in your prayers.

Look I have hands...

My big brother Omar.

My Daddy is so proud of me...

Tuesday, November 4, 2008

Extubated Again!!!

Juliana has been extubated again. Yeah!! She is now on CPAP which to me is a major upgrade. The ventilator is no longer giving Juliana breaths. It simply supplies constant pressure to keep the air ways open. Juliana has to do all the work. Yesterday she had her new broviac line put in so she is now receiving more nutrition from her TPN. The plan is to get an upper GI study done again so that the Doctors at Children's can see what she has going on in her intestines. Even though she had one done at Yale I think it is great that we will get a second opinion. After the study the doctors will determine if she is ready to start feeds through her belly. I am so anxious to get it done but it's best to wait a few days to see how Juliana handles the CPAP and if she may even move on to high flow nasal cannula. I also have to keep in the back of my mind that this may not be a permanent move as it was done only about an hour ago, but I really think she will handle it just fine as her vent settings have been so low over the last few days. We are rollilng right along and I can't wait till Friday when we can lay out an actual plan for Juliana coming home. I am sure it will still be months from now but just to set a course of action and some goals is a big step for us.

Now for some more pics of Juliana....

My Halloween Costume... A Pink Peanut M&M.
Wrapped up tight so I don't pull out my tube.

Monday, November 3, 2008

More pics!!

Me and my Grammy.

Cuddling with Lamby (actually Lamby is on Pacifier patrol)
Sleeping with my Daddy.

More cuddling with Lamby.

Just waking up after the long ride to Boston wondering where my clothes went.


That is the only word I can think of to describe a number of things. One would be Juliana. She is the most amazing little girl I have ever laid eyes on (I may be a bit biased here). Two would be Children's Hospital Boston. Although I do struggle right now with the distance and have spent many nights (and days) in tears, she is in great hands. It's been one week since Juliana arrived at Children's and already miraculous things have happened. Juliana is back on the road to extubation (hopefully before she decides to take matters in her own hands). The nurses have been just wonderful. They are comforting and friendly and really try to understand our family situation. With little Omar at home and Juliana in the hospital I have really been torn between my two children this past week. Also financially, not going to work isn't really an option. I would love to just leave everything and be at her bedside 24/7, but that would mean that she wouldn't have a home to go back to when she is released, nor would she have insurance that has been gracious enough to cover her medical expenses without me chasing after them. Pulling her brother out of school also would not be very fair to him. We are doing the best we can to balance the needs of both of our children which has been very challenging with Juliana in the hospital. I am so grateful that I was able to gain some trust this weekend in the doctors and the nursing staff at Children's. Having that trust really makes it easier. I just pray that our stay will be short and sweet, but I don't want to get my hopes up to high. We still have many bridges to cross before she can come home.

This week we will have a sit down with the doctors and set a plan for Juliana's return home or to a hospital in Connecticut. I am more than willing to do whatever home care she may need and the doctors and nurses are well aware of this.
Well now for some pictures.

Breathing on our own (for just a minute).

Look at those beautiful bright eyes.
(A bit yellow but that's why we are here in Boston)

Taking a nap in our big girl crib

Content for the moment....

and angry the next.

Saturday, November 1, 2008

Self Extubation

Juliana is doing very well. She has been trying to self extubate herself this week. It seems though that she might be ready soon. So for now we have to wrap her little hands up tight so that she will not pull her tube out. We have been able to wean her settings qite a bit this weekend and are working towards presure support only which means that the machine will not have a breath rate set. If she can do well with this then she may be able to move on to CPAP. Her last blood gas was the best we have seen in quite a while. Her CO2 was 55 down from high 60's and low 70's. Everyone was so excited to see this. I think this has a lot to do with decrease in her lasix (diuretic) dosage she is getting. I was quite worried at first because her support had actually gone up for a while but the doctors reduced her total fluids and are getting her nutrition under control. I am very happy about her progress.

Sorry there have not been many pictures lately but I have plans to post some on Monday. We have tons to choose from just not very much time to get them in the computer and online.

Wednesday, October 29, 2008

We made it to Boston!!

Juliana made it to Boston and is getting to know everyone. Well actually they are getting to know her. You could tell she knew she was not at the same hospital. She had a little fit when she woke up from her sedation, but was able to settle down and fall back to sleep after I swaddled her. She will start on the Omegaven on Friday, so for now she remains on the TPN with regular soybean oil lipids. It's been a hard week for me as I haven't seen her in 2 days and won't see her til tomorrow night.

The nurses have been great. They seem to really listen when I talk to them about Juliana and her care and medical treatment. After three months of life Juliana has developed some real likes and dislikes. She responds well to some treatments and not so well to others, so it's important to make everyone aware of what works and doesn't work with her. The doctors still haven't made any real decision regarding her ostomies and reanostomosis as they are still getting to know her also. Hopefully within the next week we will have a plan in place. Please continue to pray for Juliana and her recovery.

Saturday, October 25, 2008

Saying goodbye is sooooo Hard

It's wonderful that Juliana is able to go to Children's Hospital Boston, but terrible that we have to leave so many new friends who are almost like family to us. I think this is the hardest part about preparing to leave. We have become so attached to many of the nurses and doctors at Yale. I can actually sleep at night knowing that she is in such caring hands. As the week goes on we continue to have to say our goodbyes to so many nurses that have been there through many storms and allowed me to cry on their shoulders. Even if they have only actually had Juliana as a patient once or twice they continue to check up on her and come visit her to say hello. It's been a very emotional week for us but I know it's for the best.

Juliana has been at a stand still for the moment. She is just hanging out in her crib day to day with out very many changes. Her oxygen requirement continues to fluctuate but her vent settings have remained the same. I am hoping that Boston will be able to help Juliana get back to feeding again and with the magic of omegaven repair her liver that is continuing to deteriorate day by day. I am still hoping to have Juliana home for Christmas, but as long as she is getting better I can deal with spending Christmas in the hospital.

Please continue to pray that Juliana has a safe trip up to Boston (her first time ever leaving the hospital), and that her liver will make a speedy recovery while her intestines heal and begin to gain function. She needs to eat and be able to absorb her nutrition through her intestinal system before she can come off of the TPN and eventually come home (or at least to Connecticut).

Tuesday, October 21, 2008

Going to Boston

As you know Juliana has had some gut issues over the last month and half. She has not been tolerating her feeds and has been receiving a nutrition packet her whole life to ensure that she is getting the nutrients, vitamins and fats she needs to thrive and grow. Although this is meant to benefit her at the same time it is hurting her and the longer she is on it the more damage is done to her liver. Her liver is in really bad shape right now and is not going to get any better if things continue the way they are. Fortunately the Children's Hospital Boston has a great program that has been saving children's lives and livers. They are giving a special nutrition packet that contains fish oils. These oils replace the lipids (fatty acids) that are given with the TPN. Her liver will not heal over night but with time her liver will stop deteriorating and eventually improve. Her reanostomosis is not scheduled for another 3 weeks. So we anticipate that she will remain in Boston for at least a couple of months. After her intestines are reconnected she will need recovery time and then will have to build up her feeds to the point were she can come of of the TPN. The goal is to keep her on the fish oil program till she is at full feeds and no longer using the TPN.

I know this all sounds great for Juliana and it is. It is going to be very hard to only see her on weekends. I have been at her bedside everyday (except for one day when I was battling a fever) and to think that she will spend four days a week without her family is terrible news to me. Juliana is stronger than all of us and I know she will do just fine. I am really trying to think of it as just a couple of months out of her long life that we will share together.

Please keep us in your prayers because the battle is not over yet. We have come a long way but still have a long way to go.

Wednesday, October 15, 2008

4 Weeks!!

In four weeks the surgeons are planning to reverse Juliana's ostomies and reconnect her intestines. Of course we will have to start from the ground up again on feeds and she may still have some other lung issues to deal, but I am hoping to have her home by Christmas. She has been doing very well over the past week. She remains on NIPPV and seems very comfortable with it. There haven't been many changes on her vent settings which is fine. She is loving the crib life and surprisingly can sleep very well with all the noise in the room. I was concerned she would not be able to adjust to all the noises that she didn't hear while in the isolette, but she is just fine. I still have not really heard her voice yet as she is still quite hoarse from all the weeks of intubation. Her feeds have been great and we are now seeing stool from her colostomy bag and her rectum. Her eye exam went very well yesterday and her condition is improving. She is doing everything she is supposed to do at this point. We just have to wait four weeks for surgery and take it from there. I am so proud of her.

Sunday, October 12, 2008

Big Girl Crib!!!

Happy Birthday!!!! Juliana is 3 months old now and for her birthday she graduated to a big girl crib. At 3lb 9.6oz they feel she is big enough and old enough to try out the crib. She had been set at crib conditions in her isolette for most of the day and was able to maintain her temperature. We will also have to watch to be sure she doesn't loose any weight. We don't want her to use too many calories trying to stay warm.

On Friday she went down to the OR to be seen by the ENT specialist. He took a look with a microscope at her airway with the hopes of extubating her again. She is extubated now and the ENT feels that she doesn't need a trach at this point although it is still an option. She shows no signs of subglottic stenosis (narrowing of the airway) and her vocal chords look great. This is more than we could have asked for. She seems very comfortable with the NIPPV and her new crib.

The plan for now is to continue with feeds through her feeding tube right now of 1cc per hour continuous and and then refeeding the contents of her ostomy bag in to the right stoma. To date we have not seen any stools from her rectum, but I am sure she will leave us some poopies soon. This will continue untill the surgeons feel she is ready to have her intestines put back together.

Please continue to pray for Juliana. All of your prays are so appreciated and definitely in need.

Thursday, October 9, 2008

Juliana has been very stable over the last week. She had her first eye exam since the surgery and her condition remains the same. We won't actually see any real results for about 3 weeks when the scar tissue starts to form. It's really good that there has been no change as her condition was progressing very quickly. She is scheduled for another check up today or tomorrow and the retina specialist will continue to follow up with her over the next two months.

Now back to her respiratory status. Juliana had to be re- intubated for her eye surgery and the intubatation was very "traumatic" according to the doctors. It seems that her air way is a bit swollen which made intubation very difficult. She still needs to have at least one more surgery where the surgeons will reconnect her intestines and reverse the ostomy. This won't happen for at least another 5 weeks. So the concern is that she will need to be re-intubated for that procedure and may also have some trouble if she is extubated now and then re-intubate later for that surgery. It's not ideal to leave her intubated until that time comes. So the plan is to start her on a short course of steroids to bring down any superficial swelling in her airway and extubate her tomorrow in the O.R. where the ENT specialist will be able to thoroughly exam her airway. If he finds that her airway is okay and shows no sign of Subglottic Stenosis (narrowing of the airway) then she will be extubated. If he feels that she is showing signs of Subglottic Stenosis then she will be re-intubated right there and a tracheotomy will be scheduled. The trach will actually give her more time to heal with out having to be intubated. She will have use of her mouth again and will still be able to get the ventilator support she needs.

Juliana is back on feeds again and is getting 1/2cc (like 1/2tsp) every hour continuous. Now I know this is going to sound gross but if it works it works. The plan is to take whatever output she gets in her colostomy bag and re feed it through a feeding tube placed in her second ostomy. This is offering the chance for her to better absorb the nutrition she needs from her feeds. She will still remain on her iv fluids because at this point it's really hard to measure what she is actually absorbing from her feeds and also because she is receiving such a small amount. Hope fully this will work for her till the surgeons feel she is ready to be "put back together".

Thank you as always for your prayers. Juliana is doing very well compared to where we were 3 months ago. She has gained quite a bit of weight and is now 1600 grams or 3lb 8 oz. I will try to post again in a couple of days, but as you know my life is very busy right now.

Wednesday, October 1, 2008

Another Surgery

I thought we were free and clear and on our way to recovery. Well that turned out to be false. Juliana had another eye exam yesterday and it turns out the in a weeks time stage 1 ROP (retinopathy of prematurity) progressed to stage 3. She will have laser eye surgery tomorrow. Hopefully this will begin to repair the the blood vessels in her eyes and save what ever retina she has. She will most likely need glasses but will hopefully not be blind. This surgery will lessen her chances of retina detachment from 95% to 20%. So, there is still a chance that the scar tissue from the surgery may become elasticized and pull on the retina. As always we hope for the best for Juliana. Fortunately the eye doctor was able to catch the ROP and PLUS disease at it's begining stage so she has the best chance of recovery if the surgery is done now.

Last Friday she had an upper g i test which went very well. For this test the surgeons put some barium into her stomach so they can see better in an xray if there are any blockage or breaks in the intestine. Everything looked fine so she started feeds of 1/2 cc per hour continuous and increased by a 1/2 cc per day up until yesterday. She started doing what they call dumping. This means that whatever is going in is coming out with out being processed or absorbed by the stomach and the intestine during digestion. Her output continued to increase so her feeds were stopped again and blood and urine cultures were drawn to determine if she is septic again. This was just done overnight so it will be a couple days before we can rule out infection as a casue of her dumping. I don't know what the next step will be if she is not septic. At this point my main concern is getting through the laser eye surgery with out complication.

Please continue to pray for Juliana. As you can see the battle is not over yet, but we coninue to fight.

Wednesday, September 24, 2008

Extubated at last!

Finally Juliana has been extubated. Yesterday was a great day. I finally was able to see Juliana's mouth for the first time without a big blue clip over it holding her et tube. So far she has been handling the extubation just fine. She has nasal prongs that look something like CPAP but it is called NIPPV. She gets puffs of air through her nose at a set rate. When she moves on to CPAP she will get a steady flow of air but she will be in charge of the rate at which her breaths are taken. She has been sucking on her pacifer alot and even was mad at me yesterday when I took it out for a second. Her voice is still a bit hoarse but within a couple of days I should be able to actually hear her cry. Omar and I have been waiting to hear her cry since she was born.

Since she has had a big change in her respiratory right now the surgeons are going to hold off till at least the weekend with their tests. The surgeons are going to perform a test on her intestines where they will put a dye into her belly and take an xray as it travels through her intestines. This way they can clearly see if there are any blockages and if each part of her intestines is functional. This requires a lot of handling which is why they will wait a few days to let her settle in to her new ventilator set up. They are being very careful as to when to start her feeds again. If she is fed too soon and her intestines are not ready she will get sick all over again. It is still very important that she gets off her TPN soon. The TPN is very hard on her liver and she will have to go back on Actigall to help her liver function but she can't have this medication unless she is feeding. Even though she is not feeding she is still gining weight and is now 2lb 10oz. I know it may still seem small to many of you but to go from 1lb 2oz to where she is now is incredible. She seems like such a big girl to me.

I am so proud of Juliana. She is really handling the change well. Congratulations to Juliana for taking one step closer to going home. Please continue to pray for her.

Monday, September 22, 2008

2nd Attempt at Extubation

On Saturday, Juliana started a third course of Dexamethasone (steroids) with the hopes of being extubated. She has been very stable over the last week. Her oxygen requirement is down in the 20's and occasionally at room air. She is still not back on feeds, but has been off the antibiotics since Sunday. The pediatric surgeons have been watching her very carefully and are waiting for the right moment to start feeding her again. Her abdominal xrays are showing improvement but not enough to make them feel comfortable with feeding her. So for now it's back to "wait and see". As we all know Juliana is the boss and it's totally up to her what happens next.

Tuesday, September 16, 2008

Infection cleared

Finally the cultures have stopped growing bacteria. It seemed like the infection was never going to clear. The cultures drawn on the 8th still show no growth. She actually had a few of her sutures removed yesterday and her ostomy is looking better. At first they were a really dark red and almost looked necrotized. Now they are looking more pink as they should. Not too much stool coming from the ostomy but she is also not being fed. Hopefully she will resume feeds in the next week. The doctors want to give her some time to heal on the inside. She is off her morphine drip and has not needed anything for pain except when they removed her sutures. She is up to 2lb 7 oz. (1100 grams). There has not been much change in her condition over the past few days. She is still intubated and will probably stay that way for a little while more. Her lungs are better than before and could probably tolerate her being extubated and put on CPAP, but her gut won't. So we are waiting for the condition of her intestines to improve before any changes will be made such as feedings and extubation. Please continue to pray for her.

Wednesday, September 10, 2008

1000 grams !!!

We've made it to 1000 grams or 2 lb 3-1/2 oz. After a week of no post this is the most exciting change in Juliana's condition. Over the past week cultures from her central line and iv have been drawn. So far every culture has had growth except for those drawn yesterday and the day before. I keep praying that the bacteria will stop growing. Infectious disease has been wathcing her carefully and are trying to find the right combination of antibiotics to rid her of the bacteria.

It's been a very hard week for us. The doctors had started to wean her morphine drip but today she seemed to be showing signs of pain so they have held off on the wean. She opens her eyes once in a while but spends most of her time sleeping. I am very worried that the necrosis in her intestines won't heal. Her stomas do not look too good right now. They are very dark but still draining (which I don't know if thats good or bad). She had an ultrasound of her belly and her kidneys and everything looks okay. It seems like we are at a stand still. Things aren't really any better but they are not necessarily worse.

Her respiratory is doing well. She has been in about 22-24% oxygen for the last couple of days which is pretty good considering room air is 21%. She will not be extubated any time soon as the CPAP (which is what she will upgrade to) blows a lot of air into the belly. As you can imagine blowing air into her belly will not be very comfortable for her especially with this being her second abdominal surgery.

It's been a very long journey and it's definitely far from over. We will just have to continue to pray and "wait and see". Thanks everyone for all of your support and prayers.

Tuesday, September 2, 2008

Another Surgery

Well after much progress we have had to take a few steps back. Juliana has not been tolerating her feedings any more. An x-ray was done of her belly and there is free air surrounding her intenstines. On Monday she went in for another abdominal exploration. They found tons of NEC (Necrotizing Enterocolitis) and had to perform an ostomy. What does this all mean? Necrosis is death of tissue. NEC, which is most common in preemies, is the necrosis of the tissues in the intenstines. As a result a perforation was formed. This perforation needed to be closed. Rather than simply fuse together the areas of the intenstines where the perforation existed, the ends are fused to the abdominal wall. This is done because there is still a chance that if they had fused together the ends were the perforation was removed, the tissues may still be to sick and another perforation will occur. Once the tissues are better they will reverse the ostomy, but this won't happen for at least a couple of months.

Juliana is also fighting infections. From the blood cultures drawn she is growing two different bugs. Her peripherally inserted central catheter was removed as this was thought to be a source of the infection. Unfortunately a culture was not able to be drawn from this line and we will never know for sure. In the meantime with all that is going on in her intestines and the fluid that she will need in place of her feedings along with the medications she is receiving a central line will have to be surgically placed. This line unlike a standard perpheral iv can stay in place for much longer (like 6-8 weeks) for as long as it does not get infected.

Some of her medications have been stopped like the Actigall for her liver function and the Dexzmethisone (steroids) for the inflamation in her lungs. She is currently taking two antibiotics Meropenim and Vancomycin. She is also receiving a morphine drip for pain and to keep her comfortable. She may be put back on Dopamine which helps to regulate her blood pressure but so far she has not needed it.

As far as her respiratory goes, she will not be extubated any time soon. In fact they have put her back on the oscillator (high frequency ventilator). I am not happy at all to see this machine back in our lives again. It is very noisy and shakes the baby as it forces short burst of air into her lungs. I hope we can make it through this. It's been a really rough 24 hours now. I am hoping we can get through all of this bad stuff quickly so we can move on to getting better. Please keep our family and especially Juliana in your prayers.

Friday, August 29, 2008

Off the TPN !!

Well, Juliana is doing quite well (for her at least). She has been doing so well with her feeds they are going to increase her to 10cc every two hours tonight and she will not get another bag of the TPN. Once she is done with what she has that's it. She will stay on the actigall for a while till her liver gets back to normal after the abuse it's taken from the TPN.

She received her first dose of the Dex (steroids) today and will get another blood gas later tonight. I am hoping that this is the last time we have to go on the Steroids. I would love to see her without the tube in her mouth. She seems to have a love hate relationship with it. One day she is pulling away from it and seems like she is trying to pull it out. The next day she is sucking on it as if it were a pacifier. I will definitely need to stock up on pacifiers with the way she was sucking on that tube. She is definitely getting her own character. I can't believe how far she has come. She still has at least 6 more weeks in the NICU as she needs to be 36 weeks gestation or more before she can go home. Right now she is 30 weeks but still counting and that is what matters the most. Keep us in your prayers.

Thursday, August 28, 2008

48 Days and Counting

Juliana has been doing pretty well considering her history. She is feeding now and eating it all up. Everyday her feeds are increased by 1cc. She is up to 7cc per day and will probably go up to 8 later today. Her last weigh in was at 2lb 3 oz. which is almost double her birth weight. Once she is up to full feeds they will take her off the TPN.

Her lungs are sounding a little better but still not great. So the plan right now is to start her on a course of Dexamethisone (steroids) for 5 days. Like before she will get 10 doses over 5 days with each dose being less than the previous so that she will taper off the medication with ease. She had blood and urine cultures taken yesterday. So as long as there is no growth within 48 hours she will start the steroid treatment with the hopes of extubating her soon after the treatment is done.

She had a liver function test done this week and her numbers were a bit high so she is getting actigall twice a day and they will do another test in about a week to see how that is going. She may be on this medication for a few weeks. The TPN that she receives is also very tough on the liver so once she is off of it we will hopefully see more improvment. She is off the antibiotics with one dose left of the antifungal medication (fluconazle) which she will receive today. So for now she is only getting the actigall twice daily and will soon start the dexamethisone.

All in all she has made great strides and is well on her way to recovery although we will never be completely out of the woods. We still have quite a few more accomplishment to make but I am sure this tough little cookie won't crumble. Please keep her in your prayers.

Wednesday, August 20, 2008

Juliana has been having a fantastic week following her surgery. She is off of her blood pressure medication (dopamine) and she is still maintaining her blood pressure. We have also been able to lower her ventilator settings. Since she has been so stable, little Omar was able to meet his baby sister for the first time. After seeing her and all of her body parts (which we named), Omar decide that he wanted to adopt all of the other babies in the NICU. I am sure he would be a great big brother to all of the babies, but I had to explain to him that we only get to keep one (the best one of them all).

Now to the exciting part... on Sunday for the first time in her life I was able to hold Juliana in my arms. I will be able to hold her everyday for as long as she is stable and having a good day. We started Kangaroo Care yesterday which Juliana just loved. Kangaroo care is a way of holding an infant so that there is skin-to-skin contact. The baby, wearing only a diaper, is held against the parent's bare chest. This close contact is comforting and really helps stabilize her heartbeat and blood pressure. If only I could stay with her all day in the hospital.

Last night I got a call from the hospital which of course makes me nervous. Fortunately the first words the doctor said to me was "Juliana is fine". Through some type of error (not sure if it was human or mechanical yet) Juliana's TPN (total parenteral nutrition) which is administered through iv to give her all of the necessities (sugar, amino acids, electrolytes, etc.), was set at a faster rate. This means she received a lot of fluid too fast which brought her blood sugar way up and caused her to have some issues with her oxygen saturation. Fortunately Juliana is tough and has been through way more than a little extra fluid, but this does set her back a little. The doctor put her feeds on hold again (of course right after she was finally able to get some). She did not require insulin, but her blood sugar, although much improved, is still a little high. Her blood pressure did fluctuate some but not enough to put her back on the dopamine. So for now the plan is to let her work this out on her own. If she does not lose the extra fluid on her own there is diuretic on standby. I am sure like everything else we will get through this with a little faith and prayer.

Saturday, August 16, 2008


This little girl with a big fight has amazed me yet again. She is doing much better than she was on Monday night when she was constantly desat-ing and require 100% oxygen most of the time. Since the surgery Juliana has had improved lung function. While only a small improvement any improvement is enough to celebrate over. She is being weaned off her blood pressure medication slowly with the hopes of actually feeding her. Tomorrow she will get an ultrasound of her belly. If all is well she will begin small feeds every four hours of about 1ml of milk down a feeding tube.

Today another one of her favorite nurses dressed her up. Although her incubator is climate controlled and she really doesn't need clothing, it's nice to see her in her clothes looking so pretty in pink. Especially since little Omar was able to see to her in person for the first time today. This outfit she is wearing was made especially for her by me. We are so excited to see her do well. The nurses are calling her a superstar. With all of the issues she has been through and is continuing to get over she truly is a superstar. We still have a long way to go. Please keep up the prayers.

Thursday, August 14, 2008

More Surgery

Well this week has been very eventful and it's only Thursday. Juliana's nurse (one of our favorites) noticed a little murmur when listening to her heart. She has also had some issues arising lately with her urine output decreasing and had gained over 100 grams in one night (that's like 3 oz.). So the docs ordered an ultrasound of her heart and it turns out that her PDA (Patent Ductus Arteriosus) is back. A PDA is when a valve in the heart which normally closes shortly after birth remains open. She had already received a medication for this which closed it, but it is now open again. They could have given her another dose of the medication, but it is contraindicated for the other issues that she has in her intestines especially following the abdominal surgery she just had 11 days ago. So the only other option is more surgery.

Of course any type of surgery for Juliana's tiny body is going to be risky, but with the condition of her lungs being so poor this was even more risky. During the procedure the doctors put a small incision on her left side and moved the left lung to get to her heart. A tiny titanium clip (about the size of a staple folded in half) was used to close the valve. She was very stable throughout the procedure and her blood pressure started to improve almost immediately. We are hoping that this procedure will take a lot of stress off her heart and lungs and allow more oxygenated blood to get to her other organs like her kidneys that need it.

Her lungs are still very sick with BPD and the right lung collapse still has not resolved. Please keep praying for the healing of her lungs and overall health.

Tuesday, August 12, 2008

One Month Old Today!!!

Juliana is one month old today. The last couple of weeks have been very eventful. On Sunday, August 3, Juliana went in for surgery to have an abscess removed from her stomach. She handled it very well and recovery has been fine. The doctors cultured the abscess to see what she was growing and it turns out to be three different types of bacteria and a fungus. So she is still on Meropenem (antibiotic) and is also getting Fluconazle (diflucan) for the fungus. Her belly which was once very blue and firm is looking great. The color is back to normal and her incision is healing well. There is a drain tube to ensure that the abscess drains completely which is already starting to push out. As the wound heals it will gradually push the tube out.

Now back to the lung issues. It seemed for a few days that we were doing pretty well. She was slowly being weaned on her ventilator settings. Her oxygen requirement was down to somewhere between 35 and 45 percent (normal ambient air is 21 percent oxygen). Now she has a collapse in her right lung and BPD (Bronchopulmonary Dysplasia) in her left lung. The battle right now is how to treat both symptoms without making the other worse. As of last night she was in about 75 percent oxygen and requiring a bit more pressure. Just when it seems like things are getting better we take two steps back, but Juliana is a fighter. She has fought her way to one month and will continue to fight. Please keep praying for her recovery.

Thursday, July 31, 2008

Wait and See

Juliana is now 19 days old and is still fighting. We have found out that she has an infection and is on antibiotics now. They have drawn more blood cultures and the infection is still brewing. Since removing the line where the infection started she has been improving. The nurses were able to wean her ventilator settings and she is requiring less and less oxygen. Until she is able to clear this infection the doctors will be unable to put in a central iv line. For now they are using two standard iv lines to give her nutrition and the medications she needs. Unfortunately these iv's are only good for a few days and she is running out of access points. They actually had to put an iv in a vein in her head as you can see in the picture.

For now and like it has been since day one it's just "wait and see". Hopefully the infections will start to clear up and the doctors will be able to put in a centralized iv. She also had an ultrasound of her stomach and she does have some type of fluid collecting. The doctors are not sure if it is blood or a collection of infectous fluid (an abscess). If it is blood then the treatment would be to let it clear up on it's own as surgery will most likely make it worse and cause more bleeding. If it is an abscess then they will have to either stick a needle in to remove the fluid or surgically go in to remove the fluid. At this point the doctors have decided to "wait and see". Despite it all Juliana is still growing and is now 660 grams (1lb 7oz). Please keep praying for her recovery.
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.