Sunday, May 30, 2010


Natalie continues to need higher levels of oxygenation and vent support. They did find an infection in her blood cultures so she is on an antibiotic. I was hopeful that her recent set backs where caused by the infection and we would see an improvement with the antibiotics but so far that has not been the case.

When we arrived at the hospital Friday night Natalie had a surprise waiting for us-s card with her hand and foot prints. So sweet! Steve also held her for the first time and of course loved every minute of it despite his initial nervousness.

I met Natalie's new neonatologist yesterday. She will be on a 4 week rotation with a 5 day break. I am hoping she has some new insights into Natalie's care.

I am struggling with the stress of all this and trying my best to focus on loving Natalie and not worrying about her numbers. It is so hard.

Friday, May 28, 2010

Drive-by Update

I meant to update when I came home last night but I fell asleep while tucking Annie in and then was awake long enough to pump and go back to bed.

Natalie is having a better day today. Yesterday morning was rough but by late afternoon she turned the corner. She had extubated herself again Wednesday and they did another quick attempt on C-PAP. It took a lot out of her and it seems her lungs never fully reinflated. They adjusted some vent settings, nothing happened so they adjusted some more and she finally responded. It seemed like a simple solution to be and I was frustrated that it took them so long to try it.

We are really hoping that they give her some time before trying C-PAP again. Each failed attempt causes her to lose ground and she just can't afford to keep going through that stress. I asked yesterday about using a mask rather than prongs for C-PAP but our hospital does not use masks. I am not sure if they would be willing to order one to try on her or if their equipment is even compatible. It can be hard to get a good seal using a mask and babies tend to develop pressure sores from them. Like everything else in the NICU nothing comes without drawbacks.

She is now sedated so she can recuperate. Her feedings have been stopped and started a lot this week but right now they are back on. They increased the amount of high calorie formula she's getting to try to boost her calories again.

I am off to spend the day with Steve, Annie and Natalie as we celebrate our 5th anniversary. I am desperate for Natalie to give us a nice day of rest and recovery as a gift.

Thursday, May 27, 2010


Natalie has had some ups and downs this week. Today is starting out as another down day. Her O2 requirements are back up at 100% and they don't know why. She extubated herself yesterday and they did a quick try on C-PAP. It only lasted 3 hours. She really fights having the prongs in her nose and if there is not a good seal the pressure is lost and it won't work.

I am feeling lost and frustrated. I do not understand why her O2 requirements have been climbing so much lately and they don't seem to have good answers for us. Please pray hard for Natalie. We need every bit of help we can get.

Tuesday, May 25, 2010

Tuesday and some sighs of relief...

I just got off the phone with Natalie's nurse. After that happened all yesterday it took everything I had to make the call. I was so afraid of what I would hear.

Today so far is looking much better than yesterday. Her oxygen requirements have been in the 30-50's compared to yesterday's 80's to 100%.

They were not able to pinpoint a cause for her increased difficulties. The poor baby had 4 chest X-rays yesterday among other tests. They did feel her right lung had collapsed a little but that it was not enough to be the entire problem. Her lungs actually looked less wet than they had been so that was not the entire problem either. The neonatologist felt it might be a rebound reaction from coming off the steroids. We did agree to do a longer course of steroids with a very slow weaning period of 21 days.

They changed her ET tube (breathing tube) to a larger size this morning. It is possible that she had outgrown the tube and had an air leak.

So, her vent settings are the highest they have been in a long time, but at least her oxygen requirements have come down from yesterday.

They had discontinued her feeds yesterday to give her a break and moved all her meds from oral doses back to IV meds. They are now in the process of moving everything back to oral (well, by oral they mean the tube that runs from her nose into her intestine). So, that is great progress.

The other big news today is she finally had her eye exam and her eyes look mature with no issues. SO nice to have one less thing to worry about.

Thank you all for your support yesterday. Days like that really test my limits and it is comforting to know there are people thinking of her and praying hard. I will update later if there is anymore news.

GO steroids!!! I hope they do all they can do and we see some decreased vent settings soon (although right now I will be patient and not too greedy. Today is already more than I thought we would get).

Monday, May 24, 2010


Please keep Natalie close in your hearts and prayers. Her oxygen requirements have been going up and they don't know why. They had hoped to try her on C-PAP again today but things have gotten worse instead of better. They have made some adjustments to her meds and vent settings so hopefully she will be requiring less oxygen support soon.

Friday, May 21, 2010


Natalie had some struggles today on C-PAP and had to be reintubated and put back on the ventilator. They expect her to be on low settings. As much as I knew this was a possibility it is still so hard to take a step back. I am trying to see this as time for her to rest and grow so next time it will be for keeps.

One Month Old and....Extubated!!!

Wednesday evening I was able to hold Natalie despite her being on the vent. It was incredible. She tolerated it for over an hour and slept peacefully the entire time. It is a bit unusual to hold your baby with vent tubes taped to your arm and an infusion pump filled with breast milk on your lap. At the same time it felt like the most natural thing in the world. I spent the first ten minutes crying at the relief of finally having her in my arms.

When the doctor stopped by he gave us a good report and felt she was responding well to the steroids. He predicted she would be off the vent by Thursday evening but neither of us could quite get our hopes up.

Yesterday I called around 4:30 and received a glowing report from her nurse. Natalie had gone down on her vent pressures twice in the morning and tolerated the changes well. Her afternoon blood gas was "too good" so they would have to make another change. When we arrived at the hospital I walked around to check her new settings and at the top of the screen I saw the word "CPAP." I nearly hit the floor.

Five minutes after I had hung up with the nurse Natalie decided for herself that she was done with the vent and coughed her tube out. The doctors came over, said "she read our minds" and put her on C-PAP. She has been tolerating it so far but clearly finds the prongs in her nose to be very uncomfortable (the nurses say all babies do). The next 3-5 days will tell us ff she is truly ready to be off the vent and we understand that sometimes it takes a few attempts to really move on. At the same time nothing last night could dampen the joy of watching our baby breath and hearing her cry. Simply amazing.'s Natalie with her new breathing gear!!!

Our first glimpse at her entire face-the C-PAP prongs were out for a nebulizer treatment...

Tuesday, May 18, 2010

Picture Time!

Natalie now weighs 4lbs 7 ounces, just 3 ounces up from her birth weight. Breathing requires a lot of calories due to her respiratory status so gaining weight is a struggle. The good news is that she is now on much better nutrition so healing and growing should be easier.

Last night they were able to go down on of her vent settings even before starting the steroids (breathing rate is now set at 20 breaths per min). Her blood gas this morning was good so she tolerated the change well. She gets her second dose of steroids this morning so hopefully we will see some change over the next 24 hours. Her oxygen requirements have still been up and they need to be able to lower the pressure settings on the vent before they can consider extubating. It should be a gradual process, another chance to practice patience. I told Steve to be prepared-when we get the call that the breathing tube is out I will be running full speed to the hospital.

I am not sure if I have mentioned her feet before. Both were turned in a little due to her position in the womb and lack of fluid. The left foot has straightened a great deal on it's own but the right foot is still clearly a club foot. It's funny to me that had our pregnancy been normal I would have been upset to hear of a club foot. Under our circumstances, however, I just thought "Oh, it's a foot, we can fix a foot." So hard to care about other things when a baby's lungs are at risk. I look forward to the day an orthopedist comes to evaluate her because it will mean she is stable enough to focus on the more mundane issues.

Here are some more recent pictures of Natters. She seems much smaller in person...I need to put something next to her for a size reference.

First Real Clothes (Outfit courtesy of her Great Aunt Jan♥)

She looks a little less like Annie now. Actually, she reminds me quite a bit of my nephew Keith when he was a newborn. They have similar head shapes and hair.

Annie was sitting on my lap looking at the pictures and kept saying "Is that MY baby sister??? She's soooo cute!" It will be so sweet when they can actually meet!


I have gone too long without updating and am now trying to remember everything that has happened since my last post. Steve injured his back late lat week and things went from hectic to, well, whatever is crazier than hectic. Steve is feeling much better now and life is returning to "normal."

Natalie had an echocardiogram last week that showed no evidence of pulmonary hypertension. This is wonderful news as her heart has returned to normal and will not have any lasting effects from the PPH. She does have an atrial septal defect (ASD-the valve between her atriums that should have closed at birth is still open) but that is not an immediate concern. They recommend checking again in six months and doing surgery at that point if it has not closed on its own. I immediately filed that away as something I will not worry about right now.

She is also on full feeds. It is still through the ND tube but full feeds mean no more TPN. No more TPN means she can go without an IV unless she needs a transfusion or IV meds. This is huge as they were on the verge of giving her a central line and that would leave her vulnerable to infection. They started fortifying the breast milk with human milk fortifier yesterday so she is getting extra calories and nutrients. So nice to know she is finally getting good nutrition!

The nitric oxide was discontinued over the weekend based on the positive echo. She tolerated the wean from the nitric well which was a relief.

Last week ended with much frustration. The smiles on the doctors' faces turned to concerned looks of frustration as she hit a plateau and took a few steps back at times. It has been a very trying time for all involved. Steroids became a frequent topic of discussion. Steroids reduce the inflammation caused by the vent and may help enough to allow a baby to be extubated. Once off the vent the there is no new damage and lungs can finally start to heal. Of course like most of the treatments in the NICU there are risks involved. Studies have shown IV steroids can cause developmental delays, especially when used on very young babies and at high doses. In Natalie's case they feel that at her gestational age and at the dosages they plan to use that the risk is less, but of course there is no way to predict.

It was a sobering decision to make, but when we met with the neonatologist tonight we agreed to let them proceed. It is her best chance to get off the vent and allow her to heal. The first dose will be given in a few hours and hopefully we will see improvement over the next two days.

In other Natalie news, I had a very nice visit with her Sunday afternoon. She was sleeping peacefully and her head was uncovered (she frequently has a cloth diaper over her head to block out light and sound since she is very sensitive to stimuli). While she was sleeping she smiled three times and it was incredible! I know it is just a reflex right now, but I had not seen it before and to get a glimpse at what her smile will look like was such a blessing for me. I swear it will light up a room.

Her nap ended when she wet her diaper and started to cry (still so hard for me to see her cry and not be able to make a sound yet). The nurse came over to turn her for the diaper change and Natalie managed to extubate herself. It was awful. She coughed and a nurse across the room said "Was that her???" They called for the doctors and there was much commotion as they had to bag her an reintubate. Luckily another mother called me over and helped to distract me. I know Natters has been intubated countless times but I have never witnessed it before and I hope to never see it again. While she was without the breathing tube they did a short try on C-PAP to see if she was ready. She was able to maintain her oxygen saturation well but it was obvious she was working too hard to breath and it would have tired her out before long.

Such is life in the NICU that the memory of her first smile will always be tied in my mind to the time I saw her intubated.

Tonight when we arrived she was resting comfortably and receiving a blood transfusion. Poor baby has another IV in her scalp (and another shaved bald spot). Right before I left the nurse dressed her for the very first time in real clothes. I couldn't get the camera fast enough. The nurse said she looked like a real baby. Really, if it were not for the breathing tube and her other wires you would not know that she is sick. She was so bright eyed and interested in what was going on around her. My favorite neonatologist came over to admire her and said she is acting "developmentally appropriate" for her gestational age. Such a relief to a mom who just sat through a meeting detailing all the treatments she's had so far that can cause brain damage.

Please keep Natalie in your thoughts and prayers over the next few days. We are very much hoping that the IV steroids make a significant difference for her and she will make great strides of improvement.

I hope to be back later with new pictures. She is starting to gain back some weight and get chubby cheeks. VERY cute.

Wednesday, May 12, 2010

Hurry Up and Wait

Natalie continued to have an eventful day. She spit up, which should not be able to happen since the feeding tube empties into her intestines and not her stomach. They did an X-ray to check the placement of the tube and that checked out fine. Then she had a huge loose stool. They don't know why, so they are keeping her feedings to 10 cc an hour for now and waiting to see what happens.

The blood work does not clearly point to pneumonia but they have decided to do a round of antibiotics just to be safe.

Her oxygen requirements continued to be higher than normal and her respiratory rate is increased again. This is another case of "wait and see." She remains on the new vent mode which is a step in the right direction. They also decreased her nitric oxide to 2ppm yesterday and her blood gases have remained good. I will take every bit of good news that I can get.

I had a longer than usual visit with her tonight, which I needed. It is so hard to leave her and at the same time so hard to leave Annie. I look forward to the day when both my girls are at home.

Please keep Natalie in your thoughts and prayers. I am very hopeful that this is a small blip and she will continue to progress again soon.

Another Update

Natalie's oxygen requirements creeped up to the 60's overnight so they ordered a chest X-ray. The X-ray showed very wet lungs. They have ordered an extra dose of Lasix hoping that will draw the fluid out. They also ordered cultures on her lung excretions and a CBC and to rule out pneumonia.

As for good news, her vent mode was changed again to one that is a little less invasive. They feel her lungs are strong enough and that the new mode will allow for more healing. It is frustrating that the BPD is what is keeping her on the vent and the vent is keeping the BPD from healing. It is such a catch-22 and I am hoping that things shift in our favor quickly and her lungs can make good progress.

I am now spending my day waiting for test results and hoping she responds well to the interventions. I suppose being in a "chronic phase" in the NICU may not be as easy breezy as I had hoped.

3 Weeks Old!

It is hard to believe that Natalie is only 3 weeks old. Time in the NICU seems so much longer.

Yesterday afternoon we had a wonderful nurse who was so caring and supportive. She was asking me about what we had at home for Natters and what we were planning on buying. I was grateful to have a conversation where her coming home was assumed. It is incredible what difference the doctor or nurse's approach can make to our emotional state. Some can make you feel optimistic even when delivering bad news and others feel the need to remind you how serious things are when you are trying to savor a rare peaceful moment.

While I was there the attending came running over with a big grin on his face. He asked me how I was doing and I asked him how I SHOULD be doing. I really wanted a doctor's perspective on her progress since I have no idea what to expect at this point. He said he was really happy with her and where things are. The last u/s showed no evidence of blood clots much to everyone's delight and there were no more signs of infection. She is requiring much less respiratory support and the feedings (still through her intestines) are going well. We are now in a "chronic phase" and all we can do is be patient and wait for her to grow and heal. She may be on the vent 2-3 more weeks while we are waiting. I am so glad to know what he expects because otherwise I would be worried every day that she was not making faster progress.

It is hard to think of another few weeks on the vent but better to know what is ahead (as much as anyone can make predictions in the NICU). As my friend Cass mentioned in a comment, I have a love/hate relationship with the vent. On one side it sustains my daughter's very life (and there is no greater positive than that). On the other side it is also leaving her lungs with long term damage, makes her uncomfortable, leaves me unable to hold her and overall symbolizes how ill she is. When she is able to breath without it I may collapse from joy. In the meantime, I am going to sit as patiently as I can and wait for her body to grow and heal.

I wish I could share with you the smile on the neonatologist's face while we talked. That said far more to me than his words (although I keep repeating everything he said in my head for reassurance). It is hard for us to see the big picture when there are so many little dips along the way but I tell myself if the director of the NICU is happy, then I am happy.

Once again I am amazed and humbled by the love and support Natalie has received. The comments on this blog really help to bolster my spirits and I plan to print them out for her own special baby book. Yesterday a card arrived from my mother in law's coworkers and it brought tears to my eyes. We are so blessed to know that we are not alone in loving her and wanting the very best future for Natalie. Thank you all so much for you prayers and love. Natalie is a strong girl and is showing us all how to put up a good fight. I am very proud to be her mother.

Monday, May 10, 2010


Natalie gave me great blood gases for Mother's Day-it was all I asked for. They were able to change the mode on the vent to one that allows her to do more work. The vent settings are tweaked whenever her blood gases are good enough to allow changes.

Tonight when I arrived the nurse said she had noticed a soft bump under Natalie's arm. It caused a lot of discussion with the doctors who were concerned about infection. They drew a blood culture and CBC to look for signs of infection. Her white count is elevated but I don't know how significant it is. We are still waiting to see if they will start her on antibiotics or wait it out. By the time I was at the hospital the mystery bump was gone but the hand on that side was a little cool to the touch.

I gave Steve the update when I got home and Annie said "I miss Natalie, too." It is so hard to explain all of this to her. Yesterday I remembered that the TLC show about the Duggars had filmed episodes in a NICU (their youngest daughter was very premature) and let Annie watch some scenes with the baby in the incubator. It was a great way to let her see what we are talking about. When she saw the tiny baby she pointed and said "I want one of those!" I laughed and said "You HAVE one of those, we just have to wait to bring her home."

Annie continues to have big plans for her baby sister. Last night she told me "I'm going to teach her how to swim, and how to climb, and how to do sit-ups and push-ups and how to lift weights up and how to balance like a ballerina." When I saw Natters tonight I told her she better rest up because sister has big plans ahead.

I am very much hoping that she shows no further signs of infection and that her blood gases continue to be good enough to allow further decreases in vent settings. I am so anxious for her to get off the vent and on to C-PAP. I have to remind myself that is all on her time schedule. Every night I tell myself this is one more day on the vent that is over with. I don't know how many more days of ventilation there are ahead, but each one we put behind us is a success.

Saturday, May 8, 2010


Overall today has been a good day for Natalie. Her temperature has been a little elevated for two days and they think her isolette is too warm for her. While she is the teeniest little baby I've seen, by NICU standards she is hefty and the bigger babies sometimes find it hard to stay cool in the isolette. They lifted the lid today to see how she would tolerate being exposed. There is an open air crib with her name on it in the hallway waiting for her.

They have reduced her blood gases to every 6 hours because obtaining samples has been difficult. A carbon dioxide monitor was added to her breathing tube to give them a better idea of how she is doing between tests. Her afternoon blood gas was "too good" so they reduced her breathing rate on the vent from 40 to 35. When I called for the evening update her 10PM blood gas was also good so they lowered it further down to 30. No adjustments have been made to the pressure settings on the vent as she did not tolerate the changes they tried earlier this week. Her oxygen requirements are still higher than they were on the oscillator but they are in an OK range. The biggest improvement has been her respiratory rate-it is finally down to the 50's and 60's.

Her foot continues to heal. It is still discolored but the inflammation is improving. She has another u/s scheduled for Monday to monitor the clots (there is one in her right thigh and one by her liver). The attending said the clots surprised them and asked if we have a history of clotting disorders in our family. My sister does have one so there is a possibility that Natalie inherited it as well. They will not do coagulation studies on her at this point as they require a lot of blood and she does not have enough to spare. It also won't change how they treat her.

She had two nice big messy diapers while we were visiting. I have never considered a poopy diaper to be such a beautiful sight before. My face was beaming as the nurse changed her. As long as she tolerates the feedings well they will increase in 1cc increments every 12 hours. Right now she is getting 2cc/hour and they need to get to 12cc/hr to be considered full feedings.

I am really really hoping Natalie gives me a great Mother's Day tomorrow with some smooth sailing.

I saw this quote on another pPROM mom's blog and wanted to share it here as well. It has been a great source of strength to me as I've faced Natalie's recovery.

Fear not, for I am with you; Be not dismayed, for I am your God. I will strengthen you, Yes, I will help you, I will uphold you with My righteous right hand.

Isaiah 41:10

Please keep continued prayers for Natalie's health, wisdom for her medical team and strength for her parents.

I realized I have not shared any pictures of her since the ones taken the day she was born. These are nearly two weeks old but you can see she is clearly a beautiful baby girl

The one time we have been allowed to snuggle....this is bliss.

Annie playing behind the nurses station the night I was discharged. She misses the nurses terribly but does not want Mommy to return to the "hopsibul."

Thursday, May 6, 2010


Let's last update was Monday night and that now seems like weeks ago.

Tuesday I went in to visit Natalie and she was continuing to do well with her oxygen levels. I has a very nice talk with our favorite doctor (Yesef) and he was very pleased with her progress. He swung his arms around when he saw her oxygen setting was only at 22% and said "21% is room air!!!"

Wednesday when I called for an update she was up to 60% because she was agitated from her cares (diaper change, temp check etc). I was on edge from her needing a higher setting and was anxious to see her that night.

I should say here that the oscillating ventilator takes about 700 breaths a minute in order to keep her lungs gently inflated. It is an incredible force of a machine and fills the room with its presence. The sound is something like a loud air gun that fires nonstop.

We arrived in the evening to visit and as we rounded the corner to her pod it was obvious that something was different-there was quiet. When the machine that has been sustaining your daughter's life for the past week is silent it will literally stop you in your tracks. Steve went to her isolette but I was frozen. Slowly I realized that all was well-she had been moved back to a conventional vent and the hulk of oscillator had been left at her side as only a precaution. Our little girl had made a huge step in the right direction!!!!

She is still breathing much faster than they would like (around 70-90 breaths/minute and they want to see 40-60/min) but they accept that is just the way Natalie will be for now. Her respiratory rate is a little lower than it was before she was on the oscillator so it does seem to be headed in the right direction. Her blood gases have been mostly good since going back on the conventional vent. Today they were not so great and I am waiting to here if tweaking the vent settings helped. Again I am trying to not get ahead of myself over small set backs.

Eating continues to be a struggle. She is now sloughing off the lining of her stomach so she is taking Pepcid to lower her stomach acidity and allow healing. We are very much hoping that her stomach learns how to move food through in the near future. In the meantime they have placed a tube that runs from her nose down into her small intestine to bypass her stomach and get some milk in her. They just started that this afternoon so I am hopeful there are many messy diapers in her near future.

We were recently thrown another curve ball amidst all her "normal" issues. Thursday morning at 3:30 am the phone rang. Whenever the phone rings I stop breathing. When the caller ID says "University of Rochester" my heart stops. Steve answered and I tried to keep myself calm. Natalie's right foot was discolored and swollen. They were concerned it was a blood clot and indicated that her foot might be at risk if they could not resolve it quickly. This left us with many night hours filled with fear as we waited to here how things progressed. To fast forward a bit, removing all lines from her leg and elevating it has improved her foot considerably and they are following it closely. She was evaluated by a vascular surgeon and he feels comfortable waiting to see if it heals on its own. The risks of intervention do not outweigh the benefits at this time.

I had a very nice afternoon with Natalie today and held her legs for a bit (every little touch means the world to me right now). She is a very feisty little baby and I am so grateful to see her fighting spirit.

I am hopeful that the new feeding technique will work and she will heal faster with better nutrition. This continues to be an incredible mix of ups and downs that we can't quite get used to. There is no magic method for coping-one former NICU mother told me it is a matter of showing up and putting one foot in front of the other.

Monday, May 3, 2010

A Kiss to Build a Dream On...

Today Natalie had another echo on her heart and the unofficial word is that the PDA appears closed, the foramen ovale remains open (not a major concern right now) and she continues to show signs of pulmonary hypertension. They plan to continue with her nitric oxide at 4ppm to help with the hypertension.

We had a very nice visit today. Her blood gas when we arrived was great so they were finally able to lower some of her vent settings. She responded well to the lasix and her oxygen requirement was an astonishing 26%!!! This is down from 66% last night. Room air that we breath is around 21% so we were very pleased.

She did have her first feeding. The milk goes through a tube in her mouth down into her belly. Four hours after she is fed they pull back on a syringe connected to the tube to look for milk that stayed in her stomach (they refer to this as residuals). For her first feed they put in 2cc of milk and when they checked for residuals they pulled back 2.8 cc (the 0.8 extra was stomach fluid). Well, we were warned that feeding was a stop and go process and may take awhile to get going. I was disappointed that the first feeding did not go through but remain excited that at least we are trying. I also remind myself that she is still on morphine and that slows the digestive tract. She is being weaned from the morphine now so hopefully with that out of her system things will move along more quickly.

The nurse lifted the top of the isolette to change Natter's diaper and it was still up as I prepared to leave. She whispered "do you want to give her a kiss?" Yes!!!!!!!! I leaned over and kissed the very top of her sweet little head. Nattie spread her arms out and had such a sweet expression. I will never forget it-her very first kiss. If i haven't mentioned it before, she has the cutest little head with soft dark hair. I do need to post newer pictures of her soon.

I would like to send a special thank you to my mother's coworkers. I really appreciate the love and support they have shown my mother and especially the warm welcome back she received today. It means so much to me that people we were willing to cover for her so she could be with us for Natalie's first days. Thank you from the bottom of my heart!!!

We have received great love, support and prayers from people we have never met. It has been a wonderful source of comfort and we are very grateful.

I will close by saying that when we called tonight to get our bedtime update Natalie was on 23% oxygen. That makes for very happy parents!

Sunday, May 2, 2010

35 Weeks Gestation

Today was much the same as yesterday for Natalie. They have not been able to lower her vent settings but she is also not any worse. It may take a few days for her new meds to make a noticeable difference. She is completely off of the dopamine for her blood pressure and has handled the change well. Tomorrow if all goes well she will have her first feeding (a very happy development). They are also planning another echo on her heart to evaluate the pulmonary hypertension before they make any further reductions in the nitric oxide levels. She is now at 4ppm, down from 20 ppm, but those last few adjustments down are the most delicate to navigate.

My mother went home today so we started forming a new routine. Anneliese needs to have some semblance of normalcy back in her life and I am hoping it will help us all cope a little better. Since returning home Annie has been sleeping in our bed, something that rarely ever happened before. It was a nice way to reconnect but I knew moving her back to her own bed would be easier sooner rather than later. I can't tell you how nice it was to put her in her pajamas, read to her and tuck her into bed. I have really missed those little things while in the hospital.

I drove for the first time since early January and managed to not cause any disturbances. Mundane activities such as going to Target or driving are still a little surreal to me after so much time in my hospital room. I thought I would feel a much greater sense of relief at being "free," but I now realize I won't truly feel released until my bed rest partner Natalie is home with me.

We are very hopeful that the next few days will show some improvements in Natalie's lungs and they will be able to start weaning her from the oscillator vents. As always we ask for prayers of support and good health for our little girl.

Saturday, May 1, 2010

A Mixed Bag

Late yesterday started a series of phone updates that grew progressively worse. By the time we went to bed we were both incredibly tense and eager for morning so we could talk with her doctor.

We arrived at the hospital just as they were rounding on our Natters and they were very patient in updating us. Natalie has been on the vent long enough that it is causing an inflammatory process in her lungs. As the doctor explained, it is not a good thing, but it is an expected development at this point. He said it is the usual course of events that baby is born, enjoys a "honeymoon period" then encounters difficulty. That difficulty subsides, there are several days of stability and then another set of difficulties. We are currently facing her second set of expected difficulties. The good news is that the doctors feel confident they know what is going on and they know how to treat it.

Today and tomorrow she will be weaning off old meds and starting new ones. They told us to expect a rocky week and we are bracing ourselves but know that Natalie is strong and her doctors are wise.

One thing that has been hard for us is to remember that each individual update on Natalie is only a small part of a big overall picture. It is so hard to not let one bad blood gas take your imagination away from you and drive you crazy with worry. I suppose this is something we will have to work on as we adjust to life in the NICU (Although if anyone has magic advice on how to not worry about your child when she is sick I would be glad to hear it. Honestly I don't think there is a way to turn this anxiety off).

Now for the happier events of the day....

She had a WONDERFUL nurse today and she spent a lot of time talking with us today and offering her perspective. I was able to change her diaper for the very first time (Steve has already changed her twice). I've been changing diapers since I was 12 years old yet suddenly I was intimidated by the idea. She was annoyed and made faces at me but overall it was a success.

They are easing up on her sedatives as they prepare to wean her back to the conventional vent. She opened her eyes and made several contemplative poses with her hand on her chin. She is already an uncommonly beautiful baby and these little expressions are enough to melt a parent's heart.

The other excitement is that after she is off the dopamine they will start considering her for feedings. This absolutely left me in tears. It feels like a major step forward to me for her to be growing on mommy milk and not TPN (IV nutrients). Pumping has taken on a new satisfaction knowing that soon she will benefit from it.

As for me, I am working my way toward being helpful and not needing help. This is more of a challenge than I anticipated. Today I managed to stay upright most of the day and ate 3 actual meals. These are big accomplishments in my world right now.

My mother leaves tomorrow and she will be sorely missed by all of us. She has stayed here since Natalie's birth and we have grown used to her around the clock help. There are times when a girl really needs her mom and I am grateful mine was able to spend this time with me.

Truly we would have been lost without our families during this pregnancy and newborn period. Steve's family graciously made room in their schedules to watch Annie during the day and spare us the ordeal of finding last minute daycare. She has loved the extra time with some of her favorite people.

I am being told that I need to go "swuggle" with Anneliese so I guess this is goodnight. Thank you as always for your support of our sweet girl.