Wednesday, June 30, 2010

The Rainbow Connection

This has been a week of ups and downs, no surprises there. Saturday night she did an incredible job with her O's. Sunday was a day filled with record high CO2 levels and reintubation for a blocked tube (mucus build up) along with other various issues. Monday her CRP was back up but they were waiting a day or two to see where things went. Monday night her CO2 was through the roof again but this time there was no obvious cause. Adjustments were made, repeat blood gases taken and no improvement. We went home to tuck Annie into bed and planned on having one of us return if she did not turn around.

While I was tucking Annie in Steve said "Honey, you have to come see this rainbow!" I picked up Annie (it would be very poor parenting to deprive a child of a good rainbow sighting in favor of sleep) and we all went outside. Once again during a time of great worry we were given a gift in the sky to remind us of the wonders of the world. The phone rang an hour later and Natter's CO2 had come back down so much that they were able to return her vent settings to where they had been.

My niece is visiting this week to help with Annie so I am getting extra time with Natalie. Yesterday she had a very stable day and everyone was pleased. I changed 3 poopy diapers and helped with taking her temp, etc. That is about all the physical contact I get with her and I treasure each bit. The nurse sent us home telling us to celebrate that she was doing so well and that we could have a night without worry. Hah! By 8PM she was going up in her Os again for no known reason and had difficulty through the night.

That has been our week. We have another care team meeting this afternoon. We are talking about trying another round of nitric oxide therapy if she does not improve on her own in the next few days. It is not normally used when there is no evidence of pulmonary hypertension but we are desperate so it is worth a try. We are also making arrangements for another hospital to consult on her case.

Thank you for all the support, comments and cards. We are blessed as a family to be surrounded by so much love.

Saturday, June 26, 2010


Thursday evening Steve went to visit Natters and had a wonderful time. She was wide awake for over an hour and very responsive. He came home looking like a man in love. The girls are lucky to have such a wonderful daddy.

He did mention that an IV in Natalie's hand had infiltrated leaving it very red and swollen. Her nurse drew a border around the discoloration so they would know if it was getting worse.

I went in the same evening and had a totally different experience than Steve. After suctioning Natalie desatted and ended up at 100% O2. I waited for hours hoping to see her improve before I went home but she just did not recover from it. I left discouraged and sad. Her hand looked very painful and she seemed so uncomfortable.

I couldn't sleep so I called at 2am and she was not doing any better. Around 4am they drew a blood gas that looked great and did a chest X-ray. Once again there was no known reason for her requiring such high levels of oxygen. She gradually came down during the morning and by the time I arrived at noon she was sitting in the high 60's.

Friday we received word that Natalie would be moved to one of the private isolation rooms. As a result of discussion at the care team meeting, the powers that be felt she would benefit from being in a more quiet space where the lights can be lowered to her liking. We were nervous about the move as she would be disconnected from the oscillator and hand bagged. When lung volume is lost on this vent it is hard to bring it back up. As it turns out she handled it beautifully-she left pod D2 at 67% and arrived in her new private room at 67%. We were reminded of my move to a private room while I was on hospital bed rest. It saved my sanity but then again Natalie has had MUCH cuter roommates than I ever did.

We are hoping she enjoys her new space. While she is better protected from the sounds of conversation, crying and alarms, the small space amplifies the noise of the oscillator. That beast needs a muffler.

The repeat u/s on her kidneys shows the same lesions as last week. There was no real change in size. There is new debris in her bladder, though. The radiologist is now skeptical that she has fungal balls as usually they would see a change one way or another over the course of a week. She will remain on the anti-fungal meds as a precaution and they will repeat the u/s in a week. They offered to do another urinary cath for culture but we declined. I see no reason to put her through that when she has yet to have a positive urinary culture and she is being treated anyway. There are no good theories on what the debris or lesions in her kidneys could be.

The move to oral sedation went well. I am so grateful to the nurse who attended the care team meeting and pushed the issue of her sedation. Now that the morphine is oral she no longer needs IVs and the antibiotics can go through her PSC line. Everyone involved is glad to see Natalie spared numerous IV attempts.

Her CRP continues to drop. At rounds on Friday they were deciding between a 10 or 14 day course of antibiotics. I could barely contain myself. This child has been on and off more antibiotics than I can list. Now she is on one that is actually making a difference and I want them to be darn sure they go the full 14 days and get this infection. Luckily the attending agreed or I would have had a meltdown.

So, the best parts of the week from a medical perspective are the improving CRP, the move to oral sedation and the return of full feeds.

Natalie does seem to be feeling better over the last few days. We have not seen a marked improved in her respiratory status, BUT Steve just called for an update and she is sitting happily at 53%, a number we have not seen since the beginning of the week. I know better than to get myself worked up over it, but it certainly puts a smile on this mommy's face.

Natalie enjoying her new room...

Her hand is looking much better today, thank goodness.

I know there was more I wanted to say, but there is a very cute 2 year old who needs tending to before I go to the hospital. Thank you all for your support over what has been an especially trying week. We are all pulling through and so proud of our little warrior.

Thursday, June 24, 2010

The First Care Meeting

The meeting we had yesterday was to introduce the pulmonary team to us as they could very well be an integral part of our lives for years to come and also to make sure everyone was one the same page with Natalie's care. We will now be having these meetings on a regular basis.

The doctors feel that although Natalie was doing remarkably well a month ago (at the time we were told she could be home in a matter of weeks) she has not been able to bounce back from whatever caused things to turn downward. They now feel that if Natalie survives she will need to be on a ventilator for years. If she improves enough we will be able to take her home on a vent but would need around the clock nursing care. Having a child on home ventilation is possible, but it is a huge undertaking and will require months of planning. She is also months away from being well enough to even consider bringing her home.

The pulmonolgist has followed many young children on vents and says that ultimately her lungs should not affect her quality of life. A person is born with only 20% of their lung tissue, so in the next 7 years or so she can make up a lot of progress. Should she want to climb Mt. Everest without oxygen support she will have problems, but in day to day life her lung quality should not be noticeable.

Now the plan is to work on getting her meds through an oral route to spare her the many, many IV attempts she has suffered through. We want her to be as comfortable as she can be. Other than that we hope with good nutrition she grows healthy lung tissue and improves.

Should her vent settings become low enough we will meet with the ENT team to plan a tracheostomy. This will allow her to be more comfortable, free her mouth for smiles and eating and allow her more developmentally appropriate growth. This is a decision we have struggled with but now understand it is in Natalie's best interest.

We were also asked to decide what life saving measures we want should Natalie suffer an episode requiring resuscitation. It seems some members of the nursing staff are concerned about the decisions we have made to prolong Natalie's life and want to make sure we are thinking ahead. I am going to keep my thoughts on this to myself as I do not want to set things in writing that I will later regret.

I told them it would be impossible for us to make a decision without being in the moment and knowing all the circumstances. It is an incredibly personal and painful decision that Steve and I need to make on our own, not in the midst of a care meeting. Right now when we look into Natalie's eyes it is clear that she is still with us and she still has the will to fight. From talking to her doctors it is still possible for her to eventually have a good quality of life. As long as all of that is the case we are fighting.

Right now we are struggling through a lot of frustration and anger. It is still so hard to accept that after suffering months of doctors predicting she would not survive Natalie was born with lungs to live on. We were elated to see her on C-PAP and were patient when the attempt failed. Her vent settings were so low she was barely on any support at all. By the end of the week things were escalating and no one knew why. I really believe that her initial decline was handled in a very casual manner and that more aggressive investigation may have made a difference in her outcome. To be sitting here now hearing that our best hope is for her to be healthy enough for a tracheostomy and years on a vent feels absurd. The entire meeting I just kept thinking "They are talking about my baby???"

We are looking into sending her records to another institution for review in hopes that another set of minds may think of something our doctors have missed.

The morning report today was good. Natalie made her way into the 50's for O2 last night, which is always welcome news. She was back up at 100% when I called but that was due to her cares/changing position and she was already starting to wean down. She also had another BM all on her own-Go Natters! Today she will be at full feeds and they can start fortifying with extra calories again. Her growth has halted over the past week or so but she had been on TPN during that time.

Her CRP seems to be responding well to the antibiotics. Wednesday morning it was 99 and this morning it fell all the way to 66. Die bacteria, die!

This one is for my Snoogle Sisters...when I saw her I thought "Natters has her own Snoogle!" (Snoogle Sisters are the amazing women I have been sharing motherhood with online since my pregnancy with Annie.) Cute puppy blanket courtesy of Aunt Meg and G-Mo.

A happy sight...Annie on her way out to stomp in puddles. Maybe I should start wearing a tutu to lighten my mood.

Wednesday, June 23, 2010


Natalie has not made any improvements as far as her respiratory status is concerned. This is a source of frustration for all involved. The doctors do not know why she is having such difficulty-her lungs are not that premature (as she was born at 33 weeks) and they also do not feel that pulmonary hypoplasia is the problem. If the issue was hypoplasia it would have been a factor early on, not a reason for worsening status.

Her CRP continued to increase this week leading Dr. Pryhuber to think she may have a lingering pneumonia that has not been effectively treated. She is now back on two more antibiotics. She will have a repeat u/s Thursday to check her kidneys for fungal lesions. There is some disagreement about whether she actually has a fungal infection or if the lesions are artifact.

I was able to have some extra time with Natalie this afternoon thanks to some Grandma Karen babysitting (thank you!). We enjoyed hand holding and I covered her head with my hand in an effort to block some of the noise. As I was getting ready to leave she woke up and it was wonderful to see those beautiful eyes again. I was able to get my face pretty close to hers and she would focus on me for a few moments and then look around. She is so alert and behaves just as a normal newborn.

They have continued to increase her feedings so she should be at full feeds tomorrow. There was concern about her bowels being slowed too much by the sedatives she's on so a prescription was written for suppositories. Natalie must have heard them talking because the diaper I changed today (right before she was supposed to get her "shave" of glycerin) was loaded. She had not had a BM for days so I was thrilled. I had to restrain myself from high-fiving everyone in the pod. Good nutrition and growth are the keys to healing BPD so having her back on her regular diet is very good news.

Tonight we had our first sit down meeting with her care team so that everyone was on the same page. Honestly it was emotionally draining and I need to process it all before I can write about it. We are both here in a bit of shock trying to feel our way through this.

Natalie's doctor says her brain, heart, liver, kidneys and digestive system are all wonderful. It is only her lungs that are an issue, and she says to never give up on the lungs. I will add to never give up on Natalie. I am going to hold on to that as we once again try to pick ourselves up and find new strength to go on.

Monday, June 21, 2010

Monday Morning

We only had Dr. D'Angio for the weekend but really liked his approach. They did attempt reintroducing her nebulizers on Saturday and it was a disaster. Steve went for an afternoon visit and found Natalie in distress. Her CO2 was climbing past 100 and no one could figure out why. Daddy piped in with his concern about the inline nebulizer and it was a light bulb moment for the staff. The nebs were pulled and Natalie showed improvement right away. Dr. D'Angio did come up with another idea. It is a nebulizer usually given to kids with cystic fibrosis. It helps to thin secretions and make them easier to move out. Because it is only given once a day and the oscillator only has to be broken into twice-once to put it on and once to take it off she tolerated it very well. This was just added yesterday so it is too soon to see if it will become part of her normal drug regimen.

Saturday night I braced myself and called for the bed time report. Natalie was having blood sugar issues which has never been an issue for her. She is now completely off the steroids and there are no other meds that should be causing blood sugar issues. She was also at 100% O2 for no known reason. I just broke down. It is so hard to face bed time when she is not doing well. I went outside to clear my head (not so peaceful with my fun loving neighbors partying in their yard but I needed space to cry where Annie wouldn't hear). I cried, gave myself yet another pep talk and went to bed. A few minutes later the phone rings and it is U of R. I was numb-had things turned so badly that they needed us to come in? No, her sweet nurse did not want me trying to sleep with so much worry. She said the last blood sugar was good and shortly after testing it Natalie began to gag. She suctioned her and pulled out a thick plug of mucus. Her sats immediately shot up and they were able to wean her O2. Siiiiighhhhhh.....

Steve is not having much luck in terms of birthdays, Father's Day, etc.

Yesterday (Father's Day) Natalie was having a tough time in the morning. She was up at 100% and no one knew why yet again. This was when the new neb was tried and she seemed to have an immediate response. Her O2 dropped down to 70 but then bounced right back up after 20 minutes. The nurse got her onto her belly and things settled down. We had to take turns going into the NICU since we had Annie. I went first so I could leave his Father's Day card in her crib. Her nurse was all smiles-Natalie was down in the 50's for O2 and had been resting comfortably. The neb and being on her belly were a great combination. I spent a long time staring at the back of her head (it is a very cute back of a head and I can seriously stare for hours).

I was telling the nurse about her eye exam to rule out fungus balls and she said "Oh! She had that Friday. Everything is fine." The doctors were changing service on Friday night so I suppose that it why we hadn't heard, but I am still bothered that we were left anticipating it all weekend when it was resolved. WONDERFUL news that her eyes are not involved.

I left the NICU with Natalie having great numbers and was so happy to send Steve in. He arrived and the nurse painted a much different picture for him than she did for me. He left bewildered that the nurse felt so negative when everything else told us Natalie was pretty stable. This left the rest of our Father's Day in a depressing funk.

Her white count has gone down from 29 to 19. Her CRP (that is a general indicator of inflammation) is higher though.

Dr. Pryhuber is back on service today and is concerned about the CRP. She has ordered another set of blood cultures and a fungal blood culture. I am sorry for Natalie getting stuck again but also glad to see they are being cautious.

She also wants to start ramping up Natalie's feedings. This is a great relief to us. She is at 3 cc and hour now and as long as she is tolerating her feeds will be going up 1 cc every 8 hours. Good nutrition is incredibly important for babies with BPD so this is a very happy development. Here is hoping Natter's tummy can handle the food despite being on morphine.

We hope to meet with Dr. Pryhuber in the next day or two and get her perspective on things.

Saturday, June 19, 2010

Belly Shots

I have gotten several comments about her belly picture and realize I should have added a caption. Part of the reason it looks so round is the angle of the picture-in real life it was not so exaggerated. They did feel she was swallowing some air so they added an NG tube to vent her stomach and allow more room for her lungs to expand. Her girth is measured every 4 hours and they describe the quality of her tummy-ie hard, soft etc. That day she just needed to make some toots :0)

During rounds this morning they felt her lungs may be "wetter" due to some med changes. When she went on the oscillator they discontinued all nebulizers. For some reason they can interfere with her ability to ventilate CO2. They added an inline nebulizer and will watch over 24 hours to see how she tolerates them. She is also getting a bonus dose of lasix. I will be over the moon if she shows improvement this afternoon. One of our favorite nurses is working today which always makes the day a bit easier.

Last night we had a great report from the NICU and had a long conversation about her treatment plan. Annie was very patient and sat cuddling me while she listened to yet another "Natalie's lungs" conversation. When I tucked her in I said Natalie was feeling better tonight and that was what Mommy and Daddy were talking about. My sweet sunshine girl said "Matawee is feeling better and that make Mommy happy and it makes Daddy happy and it makes ME happy!" Then she gave me a great big hug. She gets upset with Natalie taking Mom and Dad away so often, she gets frustrated with the endless conversations but she also has such a tender place in her heart for this baby sister she has only seen once. I am very proud of how Annie as a Big Sister.

Friday, June 18, 2010

Saturday Morning...a lot of catching up to do.

So Wednesday night we were at Natalie's bedside and noticed she was breathing more and more about the vent. She was having retractions which are so difficult to see. At first the nurse was not concerned and said it was just hard to get her sedated enough to stop her from breathing over the vent. As time passed it became worse and the nurse asked the doctor to come bedside and observe. When I say ask, really I mean she sent another nurse to deliver the message in a big hurry and people came running.

The CO2 monitor was reading up in the 90's, and while it is not considered to be accurate (used more for trending) it has been correlating well with her blood gases. I was beginning to feel more and more panic rise in my chest. They pulled the vent and bagged her so the doctor could hear her lung sounds. It appeared as though now the left side was starting to collapse (on Tuesday it was the right side that had collapsed). The blood gas CO2 was in fact 90 was accurate and I felt sick. She had been going along with CO2s in the 60's on the conventional vent and I was so scared to see her not able to eliminate CO2 on the oscillator.

The doctor tweaked the power setting (this adjusts the "shake" she gets and makes her visibly vibrate more. Part of assessing Natters now is checking to make sure she has good "shake."). No immediate response. We had to leave once again because Anneliese needed to get to bed. Dr. Dadiz promised to stay by Natalie until she was certain she was stable. Bless her heart, she was there until 9PM. After reminding us to not focus on the numbers, she later told me Wednesday night she had to force herself to walk away so she did not fixate on the numbers herself.

So that was Wednesday. We were sad and discouraged.

Thursday was a better day. She made it all the way into the high 50's for O2. It only lasted for a few hours but it proves her lungs are capable of getting that low. I saw her in the evening and she was very alert despite all the hard core sedatives she is on (morphine drip, versed and fentanyl). She is one tough little lady to fight through all that and be awake. Several nurses have said she is her own worst enemy-she fights so hard even at times when she would be better off letting go and relaxing.

Friday I was able to make it to the hospital while they were rounding thanks to Grandpa and Aunt Audi babysitting (Thank you!). I wish I could be at rounds every day. When I arrived I checked her O2 display and it was at 55%. I pointed and the nurse looked at me and grinned. That was the third time since being on the oscillator that she made it down that low and stayed for several hours.

The big news Friday is that the results from her kidney and liver ultrasound were back. It appears there are two areas in her right kidney that have fungal infections. Once again it is "well, it could be something else, but we really feel it is fungal balls." She had already been placed on anti-fungal meds in anticipation of them finding a fungal infection so now they will continue at the same dose. They discontinued her antibiotic because they feel confident the infection they suspected from last weekend is the fungal rather than bacterial.

The kidney u/s also revealed that her kidneys are slightly enlarged (hydronephrosis). This increases her risk of developing a urinary tract infection so from now on she will be on a low dose of prophylactic antibiotics. When she is stable enough and no longer requiring huge pieces of medical equipment to breathe she will undergo a dye test to diagnose the cause of the enlarged kidneys. In the meantime the antibiotics will hopefully prevent infection and the kidneys will be a nonissue. I have once again added a new item to my "worry about this later" file.

There is one other complication regarding the fungal infection in her kidneys. When a baby has a fungal kidney infection they are at an increased risk for having "fungal balls" in the eyes. Boy I hate the term fungal balls-it seems like they should be cute rather than something that makes your baby ill. It is not common, but happens enough that checking the eyes when there is a kidney fungal infection is standard of care. Natalie will have her eye exam early next week. There are implications for her eyesight if there is a fungal infection present, but I have decided not to worry about this unless it becomes an actual diagnosis. My heart is already overwhelmed with worries over blood gases and O2 levels to let much else in.

They have increased her feeds from 1cc an hour to 1.5cc an hour. It will be a very gradual increase in feeds to give her intestines a good chance at tolerating them well. Full feeds for Natalie are 15cc an hour with a lot of extra calories mixed in so we have a long way to go before she is at optimal nutrition. In the meantime she is back on the TPN.

She has had one weanable blood gas over the past few days-her CO2 was all the way down into the 40's. That was early Friday morning and she has tolerated the change well so far. Her blood gases since then have all been "decent."

Our Saturday morning update was not so great. She has been up at 100% again but the nurse was finally able to wean her to 90%. A chest X-ray did not reveal any obvious issues so we are waiting to see what happens. Dr. Dadiz was only on service for a week so there is a new doctor covering this weekend. Dr. Pryhuber returns Monday. I am less than thrilled that Natalie is starting the weekend having difficulties and the neonatologist is not familiar with her.

The NICU experience is often described as being a roller coaster. Right now it is more like the bumper cars. I am sitting still, trying to catch my breath and brace myself for the next hit that will come out of nowhere. Other times it feels like one of those rides that just spin you around until you wish you hadn't eaten lunch. Either way I am anxious for the day I can describe being Natalie's mother by using gleeful analogies.

Updates are a little hard for me right now as I never feel confident about where we stand. I am trying to look at her status of a period of days rather than a day to day report. Things change so much and usually without a reason anyone can identify.

My instincts tell me that if the oscillator is going to make a difference that we will not see big progress for several weeks. She needs the time to grow and heal....and I need to have the patience to allow it.

Wednesday, June 16, 2010

Wednesday evening

Today was not as great as we had hoped. Natalie has had some ups and downs as usual. They are having trouble sedating her enough so that she does not fight the vent (it works best when she is not trying to breath over it). The difficulty is that if they have to use high doses of morphine she will no longer be able to eat. Good nutrition is vital for healing her lungs and improving the BPD.

There is not much new to report. We are hoping they find the right balance of meds so she can stay on the oscillator. The only other options are attempting the jet vent or going back on the conventional vent. At this point she would require much higher settings on the conventional vent and it would be further damaging to her lungs.

Tuesday, June 15, 2010

Read this and feel better

After I got off the phone with the doctor this morning I was feeling a bit more optimistic. She felt that by the time we reached the hospital Natalie's O2 setting would be even lower. Well, Steve went for a quick visit during his work day and her settings had gone back up to 95%. They have also placed a CO2 monitor on her chest. The numbers themselves are not accurate, but by tracking them the doctors can see if her CO2 is trending up or down. This should reduce the number of blood gases she needs. While Steve was visiting her CO2 was tracking higher and higher. He called to update me on my way to the hospital and I felt deflated.

Luckily my mother in law happens to be a saint and took Annie last minute so I could go visit Natalie. When I arrived at the NICU I was trying my best to stay calm and collected. The receptionist called the pod to see if I could go back (this is standard procedure each visit) and I was told to wash up, sit down in the scrub room and wait. They would come get me. This has never happened before and I was terrified of what it meant. Was she being bagged? Had she crashed?

While I was waiting the nurse manager happened to walk by and notice me. She came in, grabbed my face and said "Natalie is going to be FINE. I just know it deep inside. This is not entirely unexpected. You've been here before and I am sure never wanted to be here again, but she made it through last time and she will again. I saw her yesterday and she was wide awake. When I called her name she looked right at me. She is strong and she is fighting." Can you imagine how my chest opened up and my heart was lightened? Why can't these angels drop by every day?

Natalie's nurse (one of my very favorites) then came in and said "Natalie is doing well. We are trying to place her PSC line (similar to a PICC line) and it will be awhile. Go out for a bit and I'll call you when it's done." I was sad that Nattie needed another painful procedure but grateful she had a loving nurse by her side.

I did step out to clear my head. Unfortunately they were unable to place the line. This meant they had to try again by doing a "cut down" where the arm is opened up so the vein can be directly manipulated. She was heavily sedated for the procedure and I am told they also numb the area. As long as the line is in she will have sutures in place. I am very concerned about infection but it is another situation where we have to do what must be done and worry about consequences later.

I went in to visit her before the second attempt and felt better than I thought I would. I've mentioned before that the oscillator is an imposing and loud machine. It also makes little Natalie vibrate and that takes some getting used to. At the same time, she appeared comfortable and relaxed.

Here's the amazing news-her O2 was at only 70% !!!!!!!!! AND she was satting in the 90's!!!!! Her CO2 was trending down again as well. Such is our life that O2 settings in the 70's are great news, but I am not turning my nose up at it. The nurse was very pleased and said she feels the oscillator is what she needs right now. Apparently she had been thinking they should try it for about a week. It seems we were all walking around thinking about the oscillator but no one wanted to say it out loud. Me and my big mouth. I wish I had opened it sooner.

Our evening update was that her blood gas showed her as being overly ventilated-music to this mom's ears. Goodness, I have not heard them say "over ventilated" in weeks. They were able to go down a little on the vent's power settings and she will have a repeat blood gas late tonight. So far she seems to be tolerating the power change well. Her O2 requirement has stayed around 70-75% although it had to be raised to 100% while she was getting her cares done.

So far there has been no news on her cultures. She was put on an anti-fungal med and a broad spectrum antibiotic. No decision yet on whether they will do a full course of meds even if nothing is cultured. The doctor was amazed last night at how liberal the infectious disease team has been with giving her antibiotics. There job is to keep it to a minimum. They are really making exceptions for her in hopes of it making a difference. While I wholeheartedly agree restricting antibiotics is what is best for the general public for controlling drug resistant bacteria, when it comes to my critically ill infant I say "bring 'em on." In my defense Anneliese is nearly three and has never taken a single antibiotic so maybe it all balances out.

They have yet to find a way to manage her secretions on the oscillator. A new nebulizer treatment has been added that is supposed to help break them down and move it out. The jet vent does a great job of clearing out secretions and that is the exact reason it failed her. They could not keep up with the suctioning.

This morning I was nearly immobile with fear of what the day held. I have been trying to prepare myself for making unthinkable decisions. Guess what? You can not actually prepare yourself for such things. Instead I am trying to let go of fear as much as I can. Living this way will not change the outcome and it only takes away from the time I do have right now. I am going to put my sole focus on loving Natalie and enjoying all that I can with her.

Ahhhhhh......tonight feels worlds away from last night when we stared at the ceiling for hours trying to hold on to sanity. I do feel the right choice was made and that Natalie can benefit from this change. My hope is that she can be kept calm and sedated with the vent doing all the work. This way her body can use its energy to grow and heal. Grow and heal, grow and heal. I have been whispering this into her ear and hope that her lungs are listening. We are also counting on the oscillator being more gentle on her lungs and her O2 requirements coming down. If that can be accomplished the new tissue growing should show less BPD changes and will be better quality lung tissue. Still a long long way to go but now there is hope that this strategy may work.

I know better than to go crazy with getting my hopes up right now but at least we are off to a good start with the oscillator. Today could have easily gone in a very different direction. I have a lot of hopes and prayers rested on that hulk of equipment. I also have a lot riding on the fact that Natalie is an extraordinary girl. I can not recall how many times we have been told not to expect her to make it and here she is fighting along. I think I had it right when I said I should nickname her Cassius Clay.

Have I mentioned the spoiling this child has waiting for her once I can truly have her in my arms? I know I have to raise her as I would any baby because I do not want her to be coddled and overly protected. That said, I think we are owed some months of outright pampering and spoiling to make up for all she has endured. At some point the scales need to tip much more in her favor. I promised both girls a trip to Disney World (or Mexico or any place warm and fun) as a celebration when Natalie's health allows it. It is one of the many bribes I have offered her in exchange for fighting hard. This family is going to need some serious R and R one day.

Thank you for being with me today. I took great comfort in knowing that so many people were thinking of Natters and wishing her the best. The last time she had a day like this I was curled up on the couch in the NICU family room barely able to raise my head. I was so overwhelmed with emotion that my body shut down. Today I was at least able to walk in with my head held high and face what was waiting for me. By the Grace of God for once there were pleasant surprises to meet me.

Tuesday Morning

Natalie had another day at 100% O2 but was only saturating in the 80's. The neonatologist we had been working with is out of town for 5 days so last night we sat down with her replacement.

It was a sobering conversation. People have been tip toeing around us in the last week or so and this doctor was pretty frank. Natalie has reached a critical point and she may be showing us that her lungs no longer have what it takes. This is so hard to write and really I know I am still in shock. We are so confused and angry with the direction things have taken. There are still no answers as to why she went from ready to extubate all the way to life threatening O2 requirements.

During the meeting we discussed using the oscillator. She wanted to get her secretions under control before attempting the vent change as frequent suctioning makes it difficult to keep the lungs open on the oscillator.

After the meeting I went to Natalie's bedside. It was shift change, when parents are not allowed in the NICU for one hour, but Nattie had her eyes wide open and I was not going to miss that time with her for a NICU policy. She looked tired but comfortable. I put my face as close as I could and she focused on me. It was such a tender thing to meet her eyes and talk to her after sitting through such a draining conversation with the doctor.

It was hard to leave but with had Anneliese with us and she needed to get to bed.

We called around midnight for an update and it seemed Natalie had made some decisions for the medical team. They were having trouble keeping her O2 sats up and it was time for a vent change despite her high levels of secretions. They decided to try the jet vent as suctioning works a little differently and it may be better for her secretions. The trial on the jet did not go well and Natalie was not handling the change. They then brought out the oscillator around 3:30AM. She handled this change much better.

I just got off the phone with the doctor and she had tweaked some of the vent settings this morning. Natalie seemed to respond well to the changes and they were able to wean her O2 down to 90%. The hope is that they can continue to wean her down. If not they will bring cardiology in for another consult to check for pulmonary hypertension. The doctor was very clear last night that a return of the PPH would be a very poor sign.

We are at a loss. Last night I brought Annie into bed with us because I needed to hold one of my children to get through the night. I am trying to stay calm but fear is overpowering right now.

I am going to add some pictures as a reminder of what we are fighting for. These are in no particular order but they are all from this week.

Sunday, June 13, 2010

a rough update

Friday Natters had a very difficult day. I had made plans to celebrate Steve's birthday but we were both so stressed it was impossible. At times like this birthdays are really a barely noticeable blip on the radar. He joked it was "easily the worst birthday ever" and I get it. Two years ago on my birthday I was recovering from our second miscarriage. This year on my birthday I was about to enter the hospital for bed rest and was out of my mind with fear for my unborn baby. The way I see it, next year our family is due to have some major celebrations. For now our priorities are elsewhere and that is just the way it is. For Mother's Day and our anniversary I told him not to spend one minute thinking about presents or romantic gestures. There is no energy left for such things and I did not want him to feel pressure. Right now the fact that he wakes up every day and stands next to me as we face our life is all I need. There are no greater displays of love than how a person responds when life gets this hard. I have always known that I found an incredible man and that marrying him was the smartest thing I ever did. This year has only made that crystal clear. I am grateful for the marriage we have. I imagine situations like this only worsen the cracks in a relationship and am relieved we have a strong foundation to see us through. Thank you God (and David and Karen) for Stephen.

Oh, can you tell that it is 2:30 in the morning and I am feeling emotional? I'll get on with what I intended and that is update on Natters current status. I do have more pictures, including wide awake ones from tonight that I will post tomorrow. Despite having challenging lungs she continues to be one of the cutest people on the planet and obviously the strongest person I know.

I wrote this to update some of my cyber friends and was going to try to edit it for the blog but frankly I am too tired. I trust you'll forgive me for typos and whatnot....
Last evening (Friday) Nat had her last dose of antibiotics. Hours later her temp spiked. She tends to run warm b/c she works so hard to breathe. I mean, she can not wear hats ever and she rarely wears clothes now b/c she overheats easily. Her temp has been up the last week or so but they said it was due to the breathing. Her temp was up enough last night though to raise eyebrows.

Anyhow, slightly elevated WBC, elevated CRP (a general indicator for inflammation) and the white cells show toxic granulation (which is an indicator of cells actively fighting infection). These days I am very glad for my lab training. It helps me feel at least more comfortable with the information we're given.

They ordered another sepsis work-up, this time with a lumbar puncture. The clinical side of my brain said "of course they need to look at her spinal fluid." The mother side of me screamed "Get your hands off my baby!!!!!" I am really repressing all my emotions from tonight. I saw her alert for the first time in a long time and I knew I was leaving her to have this painful procedure. It was such an awful feeling. They did sedate her for it but I HATE that she is going through this. As a mom I tear up when Annie gets vaccinations. There are no words for how I feel when Natalie needs a spinal tap or they spend hours trying to place another IV.

The two bacteria they cultured previously should have been treated by the antibiotic course she just finished. Basically they think it could be a few different scenarios... she may have a clot somewhere that is acting as a hiding spot for bacteria and making it harder for the antibiotics to treat, that she has endocarditis and that is making it harder to treat (bacteria hiding out on a heart valve), or she has an infection with a different bug and it was only partially suppressed by the antibiotics and she needs different meds. There is also a possibility that she developed a fungal infection so antibiotics are of no use. They called in the infectious disease doctors for another consult.

Sorry if this is loaded with typos. I am barely awake.

We talked about the possibility of putting her back on the oscillator to see if she would do better on it than the conventional vent but then there are major drawbacks to that as well. It can be hard to maintain blood pressure, she would need more sedation, she would be more immobile and suffer from being in only two different positions. It is also harder to manage the lungs for various reasons. On the upside it may be more gentle on her lungs and she may oxygenate better. She said she would put her on it now if we asked for it. I asked what she would do if Nattie was her baby and she said she would wait a week or two to see how things go. If, in the meantime, she reaches a point of being at 100% O2 for days at a time or she is not satting high enough on 100% O2 that she will try it out sooner.

She also explained the tracheostomy to us to prepare for that possibly happening in the next month. They feel if she is going to be on the vent a long time it will be better for her developmentally since she is full term now. It will allow Natalie to move her head freely and practice facial expressions. Clearly a tracheostomy is a major decision and we have not reached that point yet. It is mostly being discussed now to mentally prepare us in case it becomes a need.

I am hoping that they culture whatever it is that is making her sick and I am REALLY hoping that the infection is the cause of the recent problems, although the antibiotics really did not seem to improve things last time.

She did talk more about the ASD and that they have been talking to cardiology and they still do not think fixing it is worth the risk of surgery. They also say if the hypertension comes back the ASD can act as a "release valve" and take pressure off the heart. The BPD increases the risk of the PPH returning so keeping the release valve open is a significant concern.

I asked about checking her airway with a scope and she does not feel that she has seen anything that indicates an airway issue. I am not pushing for a scope because I do not want Natalie put through any more medical procedures than are clearly necessary.

I do want to add that last night when we were living life hour to hour I retreated to read a magazine and distract myself (as if turning off my brain is even possible). Anyhow, I saw a picture of a little girl playing dress up and dancing. Suddenly I felt in my heart that one day Natalie would do such things. Some day I do trust that she will be a happy little girl with few cares in the world. Some day everything that she is battling and enduring will be worth it to her. I do believe this. While it is hard to turn away from fear when your beloved child is so sick, I am trying to look ahead and see our lives put back together again.

You know I am going to ask for more prayers and good thoughts. Whatever love and positive energy you can send to our Natalie Evelyn is much appreciated. Friday night I told her about all the people who are loving her from afar and want the best for her. When I say "our" Natalie I mean all of us as I really feel she does not belong just to her parents but to everyone who has had a hand at bringing her into the world and supporting her along the way.

Now I am going to shush myself and go to sleep.

Friday, June 11, 2010


This has been a long week. For the most part Natalie was stable but still requiring high amounts of oxygen. They told us to prepare for a long NICU stay and that she may not be off the vent for many weeks or possibly even months. It is a lot to adjust to and so very frustrating when she had been doing so well a few weeks ago. They still don't know why she is continuing to struggle and that is very difficult for us as parents.

Today she is having a particularly hard day. Please keep her in your thoughts and prayers. We are anxious for her doctors to make some headway in figuring her lungs out.

Tuesday, June 8, 2010

Tuesday Evening

Two tests came back with good news. The echocardiogram continues to show no evidence of pulmonary hypertension. Her ASD is still open, but at this point repairing it would be too much for her. It does result in too much blood flow to her lungs but they treat that with diuretics. The brain ultrasound also came back clear, which is reassuring. Like many preemie parents we will not know what effect her medical situation will have on her development for years to come, so any reassurance is good news.

Natalie continues to have significant respiratory struggles this week. Despite high vent settings her O2 requirements are still high and her CO2 levels are elevated. They made some changes to her medications today-adding two new diuretics (these will replace the lasix) and upping her albuteral to 4 times a day. I am hoping and praying that these changes will bring about some good results. We plan on meeting with her doctor tomorrow to get a better idea of the plan at this point. I am fairly certain the plan is to "wait and see" but I would like to hear that in person.

It is so frustrating to think back to just a few weeks ago when she was on the cusp of being extubated. I keep telling myself that she was there once and we can get her back to that point again. I do think the pneumonia took a lot out of her and she needs more time to recuperate.

Steve had a very nice visit with Natalie last night. He was able to hold her for the second time and she was wide awake for the most part. I am jealous that he got to be there when her eyes were open but of course am happy they had Daddy/daughter time.

My parents are in town for a few days so we'll have extra help with Anneliese and more time at the hospital with Natters. Natalie enjoyed time with several grandparents today and I am sure was comforted by their presence.

She has been resting comfortably and looks just incredibly sweet. I am so proud of my little warrior!

Monday, June 7, 2010

Monday Morning

From now on I am not going to be cocky and declare a good day until the day is done. By the time I got to the hospital yesterday afternoon Nat's O2 setting was back in the 70's and she was working hard to breathe. I held her for over two hours and her O2 setting remained the same. It was so hard to put her back in her crib but the respiratory therapist did not want to draw her blood gas while I was holding her.

Her afternoon blood gas was not good. The CO2 had come back up and it was clear she had not tolerated the change in her vent setting (they came down from 24 to 23 on her pressure yesterday morning). They ordered a chest X-ray and in terms of edema it looked better than the day before. They changed her position in hopes of improving the alignment of her breathing tube and that did not help, either.

I called for the bed time update and she had a busy evening. They did her head u/s to check for PVLs. This is usually done around 6 weeks. PVLs are areas of visible brain damage and I have been nervously anticipating the results. If they do not see PVLs it is reassuring but does not mean she will not have developmental delays. If there are PVLs, well.....we just have to wait and see what the results are. I am not going to get ahead of myself.

So she had the head u/s and the nurse went to suction her mouth. Big surprise-her ND tube was coiled in her mouth. This normally runs from her nose into her small intestines and delivers a constant flow of milk. It is NOT supposed to ever be in her mouth. She must have gagged it up or used her tongue to maneuver it out. While I was trying to fall asleep I just kept wondering if she may have aspirated milk while this tube was working its way out.

The morning update today was not so great either. They had to move her pressure back up to 24 and she still had a bad blood gas after the change. They have not rounded yet so no news on how they will respond to this. I am so discouraged to think of her pressure settings going up instead of down. I am trying to give myself a big pep talk and think of good things being just around the corner.

I realized this morning that yesterday was Natalie's due date and I managed to get through the entire day without making the connection. While I was holding her yesterday the full term baby next to her (just in for the day) was screaming, eating from a bottle and burping. Nice normal newborn things. Wonderful to see yet so bittersweet for me right now. I had the hardest time keeping my tears in check watching this thriving baby while I was carefully holding Natalie's breathing tube just right in an effort to bring up her O2 sats. Sometimes it hurts too much to be reminded of what could have been.

Let's think of a happy thought.....yesterday I put socks on her for the first time. She looked adorable and now I am wishing I took a picture of her feet. I did take pictures of her bundled up and sleeping after our snuggle. She was tuckered out.

Sunday, June 6, 2010

Camping Out

On Friday Natalie's nurse devised a new way of protecting her from the stimulation of the NICU-she created a little crib tent for her.

Ms. Natters still does not tolerate stimulation but does not need to be in the fancy isolette anymore. This simple sheet goes a long way in blocking out light and noise so she can rest comfortably.

So Thursday was the very bad day. Friday was quite a bit better and they restarted her feedings in the evening. She had been on a mix of one part breast milk, two parts high calorie formula and 4 packs of human milk fortifier. When they resumed feedings they reduced her mixture to straight breast milk plus the four packs of fortifier. I am not sure if/when they will add the formula again.

Saturday I called for the morning update and her O2 setting was only in the 50's. The fifties!!!!! She had been resting and had much better color. We went in for an afternoon visit and the timing was off for me to be able to hold her. Instead I gazed at her sweet face and delighted in watching her sat in the 90's while her O2 was repeatedly turned down. She showed off for Mommy and got all the way down to 48%.

It's funny but when we get really good days like this I have a whole other kind of anxiety. I am so afraid to make the next call and have the good news taken away. Last Wednesday she was down in the 40's and that was immediately followed by an awful day. That is one of the most frustrating parts of this NICU journey-you quickly learn not to get too comfortable on the good days. This is when it really helps to live one day (or hour) at a time. I have been really focusing on the news we have now and trying like mad to not anticipate the future. This is clearly a work in progress and not something I have mastered.

When I called for the bedtime report the nurse said "Oh, you will be sleeping well tonight!" Natalie was still in the low 50's and resting well. Everyone has been commenting that she looks like she is feeling better. We did have a much more relaxing evening than usual and celebrated Natalie's good day.

While her O2 settings have been decreasing her blood gases have still not been in a range that would allow weaning the vent settings. This is crucial as her ventilation needs are very high right now-in a range that causes more lung damage rather than allowing healthy tissue to grow. I have been anxiously watching her CO2 levels and hoping for them to start decreasing.

I called this morning and was very nervous. I have this habit now of squeezing one of Annie's stuffed animals when I call. It's silly but helps brace me for whatever I will hear. This morning is our third morning in a row of good news. Her O2 settings were in the 50-70's overnight (she needs to get "bumped up" when she has her cares done and it takes her time to settle back down). She also finally had a blood gas with a pretty low CO2. They have yet to round on her but I think they will finally be able to make the first step down on her settings.

The nurse said they had just retaped her tube and she was wide awake. They had given her some drops of sugar water for the procedure and her little mouth was going. It is so hard for me to hear she is awake when I am not there but the nurse was sweet and held the phone to her ear so I could tell her good morning. She laughed and said Nattie was looking left to right trying to figure out where I was.

I am beyond grateful for these good reports. Natalie has a long way to go but how incredible to see things moving in the right direction after such a long stretch of backsliding.

Thank you so much for all the prayers being sent up for Natalie. I can not tell you the comfort it brings us. A friend of a friend even prayed for Natalie at the Wailing Wall. We have been blessed to be supported by so many people around the country. It goes a long way to holding us up on a very difficult path. Again, my deepest gratitude.

Now I need to spend some good time with Annie and Steve. She informed me this morning that I need to find a different prince to marry, because she is going to marry Daddy now. Where will I ever find a price as good as Steve?

Friday, June 4, 2010


Natalie enjoyed a nice long visit with her Grandma Karen this morning. I think she really appreciated having company during her echocardiogram (which we STILL do not have the results of at 11PM). Grandma and Aunt Bethie watched Anneliese so Steve could accompany me to the NICU. After the extreme stress of yesterday it was so nice to have him next to me today. Before heading to the hospital we stopped in at Carters and bought clothes for Natalie for the first time. It was thrilling to do such a normal mommy thing. We also picked up some new blankets. It's amazing how quickly she goes through them and I like to have her crib decked out in pretty things rather than the normal hospital linen.

Natalie was doing better today, although they still don't know if that is because she is getting more support from the vent or if the underlying cause has improved. I was able to hold her, which we both really needed.

Today her nurse suggested that I try rocking her. I have always fought the urge to do so (and rocking is a very strong urge to have to fight) because I am so afraid of disturbing her breathing tube. It seems that if the vent tubes are securely taped to my arm then everything stays in place and I am able to rock her gently. Natalie has spent over 6 weeks being as still as possible in a crib so rocking was a completely new sensation. Her eyes flew open and she looked all around trying to figure out what was going on. She was not unhappy but she was clearly confused. She would settle for a few moments and then the eyes would pop back open as she adjusted to the sensation. After several minutes she was fast asleep again and seemed to really enjoy the motion. Her oxygen requirement actually went down 10%. This made for a very happy mommy all the way around!

I just called the NICU for the evening update and she is stable. They resumed her feeds but at a lower calorie count and they will gradually add more volume until she is back at full feeds. They have finally run out of my milk (after weeks of being told not to bring anymore because they did not have room to store it). Luckily we have a huge stash frozen and can run some over in the morning. Did I mention we had to buy a chest freezer because we ran out of room ourselves? I went from being a pPROM Queen to a being a Dairy Queen. Every time we opened the freezer frozen breast milk would fall out and hit us. This stops being comical pretty quickly so now there is a dedicated freezer in the basement and we can use our freezer for food again (assuming I become organized enough to actually go to the grocery store).

Her 10PM blood gas was better than her 10AM blood gas but it may not be good enough to turn down vent settings. Regardless I was so happy to hear that her CO2 had finally gone down some.

As my mother would say "That's all the news that's fit to print." We had a nice long talk with her doctor today and the plan now is to take things hour by hour and then day by day. The best case scenario is that her difficulties have been infection related and that the next few days show improvement.

Catching Up

Tuesday we went to the hospital with Steve's brother in hopes of introducing him to Natters while he's in town. When we went back to her pod to check things out the team was rounding on her and full of excitement. The 3rd blood culture bottle to turn positive was a different bacteria than the first two. She now appeared to have both staph and enterococci infections. We all considered this to be good news as it could further explain why the antibiotics had yet to be effective.

The evening was full of conflicting theories and plans of action. The neonatologists would give us their opinions and then the infectious disease doctors would then meet with us to disagree with the neonatologists. I won't bother to write it all out as it was basically a lot of unanswerable questions and frustration. They started her on a new antibiotic for the enterococci while waiting for sensitivity results from the lab.

Meanwhile they ordered another septic work-up of blood cultures, a new breathing tube and urine collection (poor baby needed another catheter). This took over an hour and we lost the opportunity for Uncle Nate to meet her.

Wednesday was a cheerful day. Natalie's 02 requirements were in the 40's and we sat watching the vent in delight. She hadn't done that well in ages. Her doctor felt it could be her new antibiotic was kicking in. Well, they had already taken her off that drug and switched regimens so I felt uneasy that we would lose progress with the antibiotic change.

Wednesday was a big day for another reason, though. Natalie's stay has become longer than anticipated, so the powers that be approved a visit from big sister Anneliese. I was nervous about taking her in because she has high hopes of holding her sister and I was afraid she would melt down when she realized she couldn't pick her up. Instead she mostly smiled at Nattie, said "she's so teeny and cute!" and then wanted to go back out to the waiting room to play with toys. It is amazing that the tubes and wires did not phase her-she just saw her very cute baby sister. We were elated to see our girls together and it is a day I will always treasure.

Thursday morning was difficult. When I called for the morning update Natalie had regressed again and her O2 needs were back up. She also had a not so great blood gas. Things seemed stable but I was so disappointed that Wednesday was not the turning point we had hoped for. This week has been harder for me in general. Had things gone "normally" with the pregnancy Natalie would have been born this week and I would be holding a robust newborn right now. Instead I am struggling to function in a life where doctors still can not assure me that we will be bringing Natalie home, or what the future will hold for her if she does pull through.

The past six months have been a daily stress of worrying over her very life. That is a heavy load to carry and lately it has become more and more difficult for me hold it up. I am trying to be nicer to myself and lighten my expectations. Yesterday I managed to shower, do a load of laundry and take Annie to a playground. I did all that while inermittenly sobbing, but I did do it and I need to focus on that rather than berating myself for not being stronger.

Thursday afternoon I gathered up my strength again, packed some books to read to Natalie (a first) and went to the hospital while Steve stayed home with Annie. I had talked myself into thinking that another day at 60% O2 was not such a bad thing and I could sit next to my little girl, read and just love on her. When I arrived there was a much different afternoon waiting for me.

Her O2 needs were at 100% and she was not perfusing well. Her color was pale and unlike her. It was another bad day without answers. Her chest X-rays showed no obvious concerns and her lungs sounded as good as they ever do. They had a few theories. Her lasix dosage had been increased, so maybe she had lost too much fluid and was not able to perfuse well. Boluses of saline were given to replace lost fluid. The other theory was that her bowels had slowed from fighting infection and she had developed some bowel complications. A belly X-ray ruled that out but they stopped her feeds just in case. The last theory was that the antibiotics were starting to work well and that her body was being overwhelmed by toxins from dying bacteria. They assured me that sometimes when babies are fighting infection the antibiotics can make things worse before they get better.

They were also concerned that the infection had made the blood vessels in her lungs "twitchy" again and her pulmonary hypertension had returned. They decided if her O2 settings had not decreased by midnight they would do another trial of nitric oxide and see if she responded.

She was also anemic so they ordered another blood transfusion and hoped that would help.

I was beside myself. Sometimes it is all I can do to remain upright when they update me on bad days. Luckily she had a wonderful nurse yesterday and she spent quite a long time talking with me along with the child life specialist. Her neonatologist also tried to calm me down and suggested that I focus on spending time with Natalie while I still have her. Being reminded that Natalie may not be forever brought the reality of the day into sharp focus. Now I had the task of calling Steve to tell him that yet again we were in a "we have to get her through the next 24 hours" situation.

I went outside during shift change (the hour in the evening when the NICU is cleared of visitors) hoping for a short walk to clear my head. Instead it was raining so I stood under the awning to call Steve. As we were discussing their plan for Natalie I looked up and saw an incredible rainbow.

This picture does not do it justice. It was the sort of rainbow where everyone stops to stare and take pictures. My heart felt so much lighter-this had to be an sign, right?

I hadn't thought about it in a long time, but early in the pregnancy I used to call Natalie my rainbow baby. A "rainbow baby" is a child born to parents after a loss-it's the beauty found after a storm. I had hoped this pregnancy was going to be the balm to heal us after our miscarriages. Little did I know that Natalie would be born in the midst of an entirely new kind of storm. Despite all that, she still is my rainbow baby. She is the bright spot in the middle of stress and chaos...she may be critically ill, but she is still a darling new born girl who makes sweet faces, stretches her arms and grasps at fingers. Sometimes she feels as elusive as a rainbow, yet here she is where I can still lay my hands on her body and kiss her sweet head. Every day that I have that is a blessing. Every day that Natalie is here is a day she has a fighting chance.

I stayed at the hospital until late in the night. I read her the books I brought and did my best to stay calm. They gave her a new arterial line to better monitor her blood gases and blood pressure. The vent settings were increased and her oxygen requirements finally went back down to 60%. It is impossible to say if the improvement was due to the increased support or the underlying cause improving. I went home with an impressive headache and a heavy heart.

This morning she seems to be doing better than yesterday. Her color has improved and she doesn't seem to be working as hard to breath. They removed the art line because it stopped working and decided she does not need a new one. This morning on rounds they feel that yesterday was most likely her "worse before it gets better" day and that she should improve now. I am hoping and praying with everything I've got. As always I ask for continued prayers for Natalie. She is my hero and amazes me every day with her continued strength and courage. In her short life she has faced more adversity than some people will see in a lifetime and yet she keeps right on fighting. How lucky I am that I get to be her mother.

Tuesday, June 1, 2010

More Pics

(the bald patches are former IV sites)

Daddy's first time holding Natalie-they make a perfect pair!

One of Anneliese, just because she is so darn cute...


Natalie continues to require higher oxygen and vent settings, although it seems that the past two days things have stabilized rather than getting worse. She has now had 3 positive blood culture bottles so she definitely is fighting an infection (most likely staph). Still hoping the infection is the cause of her recent difficulties and that as she recovers from the infection her respiratory status will improve. They also started a new diuretic in addition to lasix in hopes of controlling her serum bicarbonate level.

I had a lovely snuggle with her yesterday-two hours! Sunday night I went later in the evening and was able to hold her for a long time as well. She was wide awake for the first half hour and SO cute. It was amazing watching her do normal baby things-waving her arms around and splaying her little fingers. I hadn't seen her awake in probably a week so it was an especially nice treat. 10PM continues to be her wide awake time, just as it was when she was in my belly.

After spending weeks in a crib I was really afraid she would not tolerate being held but so far she really seems to enjoy it and relaxes in my arms. I am getting more comfortable with the vent tubing but it still makes me nervous. I am working on focusing on Natalie and not her monitors, numbers, tubes and wires.

Thank you so much for your continued thoughts and prayers for Natalie. She is such an amazing baby girl and I am grateful to have so many people share in loving her.