Tuesday, September 28, 2010

A long week and it's only Tuesday

Over the weekend the doctors assured us patience was the key and she would slowly improve, even though it might be a little trickle at a time. I tried my best to accept that. The steroids were not budging her FiO2 at all but her blood gases remained good. My patience wore thin though as she spent more and more time at 90-100% O2. Sunday night I could not sleep. I kept going over in my head what I wanted to tell the doctor and I simply could not shut out the fear.

Monday I had our first parent day at Annie's preschool. It was very sweet seeing her class in action and having play time with her. I then went to the hospital where Natalie was requiring 95% O2 but only sating low 80's.

Her nurse was on break and the babysitter could not tell me much. I stood at the glass and glared at the doctors on rounds. It is a cliche, but there have been SO many times in our NICU stay where I have had to suppress a Terms of Endearment Shirley Maclaine outburst from surfacing. I know I will be less successful at conveying my concerns if I am crying or inconsolable, so I did my best to get a grip. Luckily our nurse yesterday is a total sweetheart and great at distracting me. She had a student with her and after about 15 minutes of talking about toddlers I was calmer and ready to make my case.

We had ruled out infection, edema and the steroids did nothing. My fear has been that the surgery aggravated her pulmonary hypertension and that the doctors wanted to wait things out rather than escalate her therapy by adding a new med. I know there would be extreme reluctance to resume nitric oxide. Rumor has it that Natalie alone consumed 1/3 of the nitric oxide used in the NICU this year. At the same time, I did not want to wait it out if she was going to be so close to 100% O2. There is no wiggle room if she gets sick and that level of O2 is simply not healthy.

I was fortunate that the doctor had reached all those conclusions on his own before we talked. Once again I was spared a dramatic outburst to make my point. He said he would request a consult with cardiology, get another echo and see what they thought.

I was able to hold Natalie, although she was agitated. Just as she fell asleep they came to perform the echo. This is about Natalie's least favorite procedure. I left to pump and Steve stayed to hold her hand. Usually we wait 2 days to hear back on an echo. By the time I was done pumping Steve was outside her door with the full report.

First, she loved having Daddy with her for the test. They joked that they were going to write an order that he must be present for all future echocardiograms. She actually fell asleep with him holding her hand.

There was no evidence of worsening PH. That is great, except now we still do not know why she is requiring so much O2. The cardiologist (who happens to specialize in PH) did not feel she would benefit from iNO. Instead he increased her sildenafil (Viagra) dosage. If she does not improve he will look into further treatments.

Once that was over ENT came in to perform her first trach change. Poor baby. It went very smoothly and they say she has healed nicely.

During all this time, Natalie was requiring large amounts of oxygen and just could not get comfortable. Steve and I had to take turns leaving the room. It was just too stressful watching her at 100% and only sating in the low 80's.

The nurse decided to get her blood gas before trying to get her to sleep and that is when things turned around. Her CO2 was only 32. That is way, way too low. I am going to skip the technical parts, but thanks to a lot of discussion between the respiratory therapists and doctors her settings were tweaked and she slowly improved. Sometimes the right person shows up with the right idea just in time.

She was still agitated but it turns out she really likes being tapped on the chest with a face mask (the cushy kind used for hand bagging). This is called pulmonary toilet, or PT. She just melts and relaxes. By the time we left she was down to 86% and sating in the 90's. Who knew you could be grateful for 86%?

Last night she was 80's to 100% again. Her CO2 seems to be under control and they have gotten her down into the 70's today. We are very hopeful that this is a turning point but of course know better than to get ahead of ourselves.

Today is Ms. Anneliese's 3rd birthday. So far she has had a wonderful day that has been just for her. I am not going into the hospital until after she is tucked in.

Thank you for your continued prayers and support. I feel like I am held together by paper clips and Elmers glue right now but am hopeful that this week will bring good things for Natalie. For starters, I now intend to hold her every day. While she had the ET tube it was dependent on her stability, but now she is free. I know it will take her some time to get used to it, but I think she will be a snuggle bug. This also means that grandparents can hold her as well. I look forward to her family getting to know Natters that much more and finally get her in their arms.

Sunday, September 26, 2010


Natalie is still requiring a great deal of oxygen support. Her FiO2 dropped into the 60's Friday but it only lasted 8 hours. She has mostly been right around 86-90%. They started steroids Saturday night in an effort to bring her levels down but after 2 doses we have not seen a change. She will only get 6 doses total unless it starts to really make an impact.

She has been able to resume Lasix and her chest films are improving, so the O2 issue is probably not related to wet lungs. I have received several messages regarding different diuretics and I want to thank everyone who offered advice. Natalie has been tried on some more gentle diuretics but always ends up back with Lasix. On the upside, for a month or so now she has been getting away with half the dose she used to require. Hopefully they can get her on some nicer diuretics soon, though.

The good news is that she is IV free. Her cultures did not grow anything interesting, so the antibiotics were discontinued. She came off the fentanyl last night as well. Restarting feeds has gone very smoothly and she is blessing us with many dirty diapers. Overall she looks very comfortable and is nice and pink.

Her lungs are ventilating with finesse again and Natters has been having beautiful blood gases. Her vent settings have come down considerably. She is back on pressure control/pressure support, which makes us very happy. Her PEEP is down to 4 (where is was pre-surgery) and her total pressure is only 2 higher than it had been. Her rate is 40 and her pressure support is 16. I realize most people do not necessarily follow the numbers, but I like to keep track for future reference and also share with those that get excited about PEEPs.

I will not lie-this backslide has been very difficult. I was prepared for a few rough days but not a week of crazy oxygen requirements. I had reached some important milestones myself recently. I no longer woke up in the morning needing to get sick to my stomach, I rarely had fits of panic before calling the NICU and I could actually enter Natalie's room without looking at her O2 setting before looking at her. All that is gone and I feel just as I did when she was at her worst. I understand we are not in the same place we were then, but my heart does not seem to see the difference.

At the same time, Annie is living the life of a nearly 3 year old and I am trying to keep up with her. It is such a crazy balancing act when one child is healthy and one is medically fragile. Natalie needs so much more than a typical baby, but the needs of a toddler are the same regardless of her sibling's health status. I ache for the worries I used to have about bringing another baby into the house and how she would respond. This is not at all how someone imagines expanding their family.

Annie had her first dance class on Saturday. Before we left I learned that Natalie was requiring 100% O2 and was agitated. So then what? Where do you go? I swallowed my fear, dressed Annie in her leotard and tights and went to make memories with her. Then off to the hospital with the intention of sitting next to Natalie until they gave in and tried the steroids (it took until 10PM). I understand that in many ways I am blessed to have these problems because it means my daughters are both still here with me. That perspective does not always keep the stress at bay and it does not always keep my patience in check. I wish I could have a do-over of Annie's past year. I wish there were 10 extra hours in each day so I felt I was at least partially meeting the needs of my children.

Natalie should get her first trach change tomorrow or Tuesday. The first change is a delicate one so ENT will be coming in to perform it. Changes after that will be made by nurses and eventually us. After that Natty will be able to be held and placed in more positions. I am hoping that will help her mobilize secretions and possibly improve her respiratory status. I am trying with all I have to keep putting one foot in front of the other and get through this. Natalie is an incredible baby and I know she has it in her to turn this around and amaze us all over again.

Anneliese embarking on a new dancing adventure

Thursday, September 23, 2010

Still waiting

Today was about the same as yesterday. All the vent settings we so slowly chipped away at have come right back. She is back on pressure control and a rate of 55 (it was 60 earlier today but the doctor lowered it again).

There are some issues with her electrolytes since she had extra Lasix and that is causing problems with her blood gases. It is all more complicated than I can explain when I am this tired. Hopefully they can get it under control so she can have her Lasix back. Her lungs were not quite as wet today on the X-ray but that won't last long without a diuretic.

The doctor keeps saying he has steroids in his pocket and if things are not turning around by tomorrow he will use them. I wish he would already.

We also decided officially to delay the GI surgery. She just is not in a place where that is an option. She has not grown in over a month so after she recovers from the trach the priorities are weaning her sedation and getting some good nutrition in her.

We appreciate any good thoughts and prayers you can send. This has been very stressful for us both and we are doing our best to get through. Fortunately my niece came to visit this week so we have been able to come and go to the hospital much easier than usual. Yesterday Ty was also the first cousin to meet Natalie. Natters slept through it, of course, but was charming nonetheless.

The good news is that Natalie is comfortable and looks very healthy. She has great color and seems to love life without the ET tube. It's just the lungs. When her fiO2 drops below 60 again I will cry from relief. This 86% business is too much.

Wednesday, September 22, 2010


We continue to marvel at Natalie's face and her new expressiveness. Any concerns about seeing her with a trach have completely faded away-we just see Natalie.

She is much more comfortable as long as she isn't being moved. Her new project seems to be getting her hands on the ND tube and pulling that out but so far her efforts have been thwarted.

That is sort of where the good news about recovery ends. Her O2 requirements have been hovering right around 86%. Sometimes a little lower, sometimes as high as 100%. Her lungs have been very wet from surgery so she is back on twice a day lasix. This afternoon they started to think outside of just recovery issues and decided to get a CBC and CRP to look for possible infection. Her CBC is perfect but the CRP is 64 (this is a general indicator of infection and should be <10). The CRP could just be from surgery, but blood and urine cultures were collected to rule out infection. She is back on antibiotics while we wait out culture results.

Her CO2 has been all over the place. We've been watching her vent settings slowly climb back up and it is so frustrating. The fentanyl seems to be suppressing her respiratory drive and she is not breathing enough over the vent. The fentanyl will be slowly weaned in the next few days so hopefully we'll see some improvement then.

Feeds were restarted this morning. She is at 3cc/hr now and will go up 1cc every 6 hours for the time being (full feeds are 27cc/hr).

We need prayers. Patience for us and wisdom for her doctors. This has been a very difficult 2 days. Even while we know the surgery is causing the set back I will not feel at ease until she turns the corner and starts making progress. So far they have not been able to figure out just what will do that.

Monday, September 20, 2010

The Beautiful Face of Natalie Evelyn

Just 45 minutes after leaving Natalie in the OR they called up to say all went well and she was on her way up. We watched them wheel her back to her room from a distance and impatiently waited to be allowed back to see her face.

Oh, she is beautiful! She did so well in the surgery and does not look at all as though she just underwent a medical procedure. I could cry for hours thinking of her face free of that tube. I was nervous about seeing her with a trach but honestly I had to remind myself to look at it. All I could see was her sweet little mouth.

I know anyone who knew Anneliese as a baby will see the sisterly resemblance. Now that the tape is gone her mouth is much more expressive. She made a little smirk and my mother in law and I looked at each other at the same time and said "that is an Annie face!"

A few nurses have come in to get a glimpse of her and of course everyone agrees she is adorable. Unfortunately she started to get a little agitated and spit up so we had to leave the nurses to their work. After a blood gas and chest film we can return. I want to sit by her all night and stare. My sweet sweet baby girl. I am so very grateful that she can experience life extubated.

Thank you again for your thoughts and prayers. This was a challenging yet joyous day. As always knowing that Natalie is loved by many helped get us through. My father mentioned today that she has been added to two more prayer groups. I am certain Natters is famous in heaven.

Counting down the days until we can hold her again-this time without the worries of the ET tube. She will be heavily sedated for the next week while the trach is healing and creating a path. After that the ENT folks will do the first trach change and she will be free.

She's In

Natalie went to the OR around 6PM. She should return to the NICU around 8 o'clock. I will update when she is settled. Thank you for all your good thoughts and prayers.

Mommy and Daddy say today is the last day with my ET tube! I will no longer be a member of the "naked neck club" but I will rejoin it someday.

Sunday, September 19, 2010

Trach Eve

Wednesday night we were told to come in Thursday and have ENT paged. We needed to sign consent for Natalie's tracheostomy and bronchoscopy (sending a camera down to check out her vocal cords and airway). Monday was not a rumor-it was fact.

She is white sheeted for tomorrow. That means she does not have a scheduled time for surgery but will be fit in when they have time. The risk is if there are many emergency cases she can get bumped to a later date. The resident we spoke with said that the surgeon is a big shot, wants Natalie trached ASAP and her tends to get what he wants. I think I will love him.

The resident was very patient and went through every aspect of the surgery and recovery. I have a feeling he works with a lot of apprehensive parents-we may be the most excited people to have their baby trached he's met.

So! Her pre-op blood work is complete, we got through a fever scare on Saturday and things are moving forward. Her neighbor was moved tonight so that Natalie will have one on one nursing during her post-op time. At midnight she will be NPO (nothing by mouth, or in her case ND tube), at 6AM all her meds go to IV and then we wait for the OR to call. I am bringing my laptop to the hospital so we can update people and of course show off her tape free face as quickly as possible. Sigh...since getting a surgical date I can hardly think about her coming back from the OR. Seeing her face after a 5 month wait, just the thought makes me cry.

Backing up to the rest of last week, the nitric when to 1ppm Thursday and she tolerated it beautifully. Saturday morning I came in and they had not rounded yet. When I returned that afternoon with Natalie's Aunt Megan it took me a few minutes to realize the tanks were gone. No more nitric oxide for Ms. Natalie!!!! It was turned off at 1PM, from 2-4PM she was up in her O's but came down on her own. Since then she has been a little higher than normal but not enough to be alarming. I am mostly trying to not think about it and wait to see what happens.

Thursday when I saw the neonatologist he mentioned that he had seen Dr. Lee (GI surgeon) that morning and he wanted to schedule Natalie for 1-2 weeks after her trach. This was news to me. I asked if he knew what surgery he was planning and Dr. D said "Oh! He wants to do the G-tube and fundoplication, we've known that for days. I thought I told you!" Even bigger news to me. I am trying to make peace with the decision. The fundoplication is a much more invasive surgery and has more consequences than just a G-tube. At the same time, it may very well save her by greatly reducing the risk of aspiration. They say it is our best option, so we are going ahead. We meet with Dr. Lee this week to go over the surgery and ask our questions. Well, first I have to research fundoplication a little more so I know what questions to ask. Dr. Lee only operates on Wednesdays so the GI surgery will be next week or the week after, assuming nothing comes up in the meantime.

The other news is that Natalie was finally examined by opthalmology. The poor child. They dilated her pupils and used some sort of forceps to hold her lids open. When I saw her afterward she looked like she was afraid to fall asleep in case they came after her again. She kept looking around the room suspiciously.

So far we know there are problems, but we don't know to what extent they are affecting her vision or what the treatment options are. She has esotropia, meaning her eyes turn inward, and nystagmus, meaning her eyes are shifting back and forth. The good news is that she can track light (but they have to cover one eye at a time) and her optic nerves look healthy. We are now waiting for pediatric opthalmology to examine her and talk with us. The neonatologist gave us his impression but also said he is not that familiar with either of her issues. Now we wait and again try to contain our worries the best we can.

Mostly right now we are anxious for surgery to get here and for Natters to finally be comfortable. She is doing her best to hurry things along. Thursday her nurse (T) was charting just outside her door when Natalie's alarms went off. T went in, saw that Natalie had spit up and it had loosened her tape. Natalie seized the opportunity and was pulling on it with all her might. T grabbed the tube to hold it in place, but she was several feet away from the emergency button and she had closed the door behind her. Poor woman had to hold the tube in just the right position and scream until someone heard.

Then today I was holding Natalie and she was having the hardest time settling in because the ET tube was gagging her. She finally fell asleep and put her hand over her face as if exasperated. The nurse and I said "Oh, how cute!" Then as quick as a flash she had that hand on her tube and was pulling. Sneak attack! The nurses have to retape her about 3 times a day now to prevent extubation and she has a serious mummy face going on. Can't wait to see what she looks like under all that!

Annie is turning 3 soon. Our life is too unpredictable for her usual birthday party so we are celebrating with loved ones as we see them. This weekend was the first of her birthday celebrations. She had a wonderful time, as did we. Thank you to our Kash family for giving her such happy memories!

A spontaneous cupcake picnic

Wednesday, September 15, 2010

Crossing Fingers, Holding Breath

I went to see Natters this morning and we eventually had a very nice snuggle. She had a hard time settling down because of the ET tube but once she did it was divine. Steve and I have both noticed how difficult it is to stay awake when holding her...she's such a snuggle bug.

I was there too early in the day to catch the doctor and Steve went in after her left for the day. We did hear, however, what he wanted to talk to us about. The official report is in on her echo and there is no visible change. There is also no evidence of the clot. Big sigh of relief. We would love to hear her echo looks better, but from what we've been told it will take a long time. The fact that it is not worse is incredible and we are very pleased.

The other piece of news is that while ENT has not come to meet Natalie, they told the neonatologist that they were looking at MONDAY!!!!!! Originally we were warned they may not make any moves toward scheduling until she was officially off the iNO, and even then they may want her off a few days before getting serious. Today she is at 2ppm, tomorrow should be 1ppm, she has the weekend to come off all the way so Monday is the absolute soonest. People, you know I am thrilled. I realize it is not a promise but it does show they are serious about moving ahead. Smiles!!!!

Do you wish I knew how to spell ophthalmologist? I realized that I have been missing the first "l" in previous posts. Sorry. I suppose it is a word I should learn well. We are still waiting for them to come see Natalie and give us their opinions. I have done some reading on infant eye issues and am really not surprised that she has developed problems. The poor child has been kept in cave like darkness (of course this is because she demands it) and her head is almost always sideways. When she looks straight ahead one eye is blocked by her mattress. Add in the high levels of sedation she's been on and the lack of normal baby activity I suppose maybe eye issues were inevitable. After the trach I imagine her eyes will be my next obsession. That and snuggling.

Right now I feel like I am chomping at the bit. I want Natalie to be in a position where she can be comfortable and move ahead developmentally. We are so close and I am trying to remind myself to be patient. Even when she can be more hands on there is a lot of catching up to do developmentally and I need to prepare for slow steady progress. I also do not want to get so caught up in her development that I miss just enjoying Natalie.

Nat gained some, then lost again two weight checks in a row. The nurses have talked them out of fortifying her more before surgery. They are too afraid it will throw her off and cause issues. I am increasing my pumping efforts and seeing some gains. I am determined to catch up to her needs. Seeing what a measly 4 teaspoons a day of formula has done to her digestion makes me realize just how much human milk means for her.

Thank you for you continued support and prayers. I can not express how much it means to all of us. I am always telling Natalie that people we have never met are loving her and sending prayers on her behalf. We are beyond blessed.

Monday, September 13, 2010

Counting Down

Finally caught her in her "one brave chick" onesie before she coated it with goo. Thank you again Emma!

Friday the neonatologists traded off. I went to say thank you to Dr. L and she gave me a big hug. She was thrilled with the progress of the last 2 weeks and said that she never would have predicted it. I love seeing a joyful neonatologist!

We now have Dr. D, and he is wonderful. As an added bonus, we get him for 3 weeks rather than the usual 2. When we last saw him Natalie was recuperating from NEC and on the oscillator. Her MAP was a stunning 22. This was in June. Dr. D said he would see us in September and all I could say was "I hope so." She is an entirely different baby than the one he left. We were catching up and he remarked that when he left service over the summer he was just hoping to have a chance to work with her again. Now here she is blowing everyone away with her strides.

He is not overly eager to turn down her vent settings. The sense of urgency is gone now that she is on pressures that will allow healthy lung tissue to grow. She keeps having stellar blood gases but they are not moving on them. One day she had a CO2 of only 40 (the lowest of her life) and they had no choice but to go down on her PEEP. Hmmm, someday I am going to take the time to explain all these vent terms.

Saturday night I called the NICU around 2am and Yesef, our favorite fellow, answered the phone. Doctors never answer so I was thrown (plus it was 2am...I am easily confused that late). It ended up being good timing, as Ms. Natters had just spit out her NG feeding for the 3 time in 24 hours. It is impossible to say if it is reflux or her ET tube stimulating her gap reflex. One of the hardships Natalie faces right now is her tube makes her cough and gag quite a bit. If she happens to have milk in her belly at the time she will spit up.

They discontinued the NG feeds for now. It was disappointing as up until Saturday they had been going really well. She needs every cc of milk she can get though and can't afford to spit it out. Now we are holding her to ND feeds until someone comes up with a new plan.

In nutrition news Natalie lost weight 3 weigh ins in a row. Fantastic for a high school wrestler, not so good for little babies trying to grow and heal. This was about the same time her rate was lowered on the vent. I think she just needs more calories now that she is doing more of the work of breathing. There is a limit to how much fluid she can handle (or her lungs will take on more edema) so they finally made the move to fortify her milk. It is a teeny half teaspoon of Nutramigen formula per 100cc of milk. Hopefully it is enough of a boost. Even though it is a very simple formula created for babies with colic,she has had increased gassiness and, well, explosive poo since starting it. At least Steve will have funny diaper stories to tease her with down the road. Oh, and I get lots of extra Natalie laundry, which always makes me smile.

On a not so funny note, Sunday a nurse noticed that the cuff on her ET tube was not inflated. The whole reason we were experimenting with NG feeds was that the cuff would prevent aspiration. No one knows how long it has been deflated, despite the fact that the pressure is supposed to be checked 3 times a day. sigh. The NICU rarely uses cuffed ET tubes because they will only put them in babies over 3 months of age (adjusted, not actual) and as you can imagine the NICU is not overflowing with 10 lb babies that are intubated. I think when things are that out of the ordinary it is easier to have an oversight. Her tidal volumes have been fine without the cuff so it remains deflated. (The cuff is like a small balloon that wraps around the shaft of the ET tube. There is a catheter that runs down to the cuff and is used to add or remove air. It can be used to completely block the airway not already occluded by the ET tube itself. That's the best explanation I can give at midnight).

They will go down on the iNO by 1ppm a day until they reach 1. They plan on holding her at 1ppm for a few days to give her body a chance to bring up her natural nitric oxide production. THEN she is eligible for the tracheostomy. Dr. D contacted the ENT folks Monday for the first time and they should be looking at her in the next few days. I am eager to meet them as they will be long term members of her medical team. I am also tempted to bribe them to get her into the OR as soon as humanly possible. What do you think would motivate an ENT surgeon?

Apparently the ENT asked Dr. D if he wanted the G-tube done at the same time. I had asked about this months ago in the hopes of sparing her an extra time under anesthesia. They told me it is against their policy. Now they are willing to do it but I am not if it means waiting around for both the ENT and GI OR schedule to magically align. I do not want this trach coming one more day later than it absolutely has to. Besides that, the neos still are not sure what route they will take for GI surgery and we are not waiting around for that call to be made.

I was not able to get the the NICU until late evening yesterday and was so eager to see my little one. She had a long afternoon-they did the echo on her heart and that is one of her least favorite procedures. Hours later she was still annoyed. I patted her back and did my best to make it better. There are no words for how painful it is to not be able to scoop her up and comfort her the way a baby should be. When we get home and I have her to myself I may rock her for one straight day. At least.

When I came back following shift change she was wide awake and content for quite a while. I showed her the new toys Annie and I picked out for her and she showed a little interest. Natters makes it pretty clear when she has had enough so eventually I swaddled her and she went right to sleep.

Today (Tuesday) things are still moving along. Her blood gases remain stable but her O's are up and the iNO keeps coming down. That seems to be the theme of the week. Once again I could not get in until late and she slept through most of our visit. When she did wake up she had a bit of a smile, but I don't know that I would call it a true social smile. Either way, it was sweet.

Oh, and she had her first real tub bath! We made an attempt a few weeks ago but she had a major desat and the nurse was nervous. This time the nurse undressed her, wrapped her in a blanket and then transferred her to the tub. She then removed the blanket and Natalie loved it. She was so relaxed she fell asleep and was super drowsy the rest of the night. I really wish I had been there to see it. One more thing on the list of "why this stinks." List was formally called "why this sucks" but I thought people may be offended. It is my way of writing off sacrifices such as missed vacations and birthdays, missed time with Natalie, missed opportunities with Annie, etc. I put it on the list and try to let it go. That lets me focus on the true problems, ie not oxygenating.

Still no official report on the echo. We are also waiting for a consult from opthamology. When it was discussed at the care meeting they put it pretty far down the list. The nurse present said she had never noticed what I was describing, so I think they went with her interpretation over mine. When Dr. D examined her on Saturday he understood my concern and moved it up in priority. My fear is that there is some window of opportunity to correct her eye issues and I don't want it missed because people can't see past her lungs.

I have been holding my breath waiting for firm plans on the surgery. It is so close but I know how quickly things change in the NICU.

One of the incredible things I have learned from this journey with Natalie is how adaptable we can be as parents. Did I ever write about the first time we discussed a trach? Natalie was 4 weeks old and very close to extubation. We had a lot of nervous excitement but with it fear that she would fail the extubations and go back on the vent. I asked Yesef about the possibility of her eventually having a trach and I could barely form the words. It was more a whisper than a question. I was only asking because I wanted to hear that I was being silly-of course she would not need a trach-look how well she was doing! Yesef did not smile or offer me reassurance. He very quietly told me it was unlikely but a trach was still on the table. I cried. For weeks every time the subject was broached I struggled to keep my composure. I had a lifelong fear of tracheostomies and could not imagine my sweet girl needing that level of intervention. Let them cut my babies throat? I was horrified.

Now? I pray for the day Natalie has her trach. I look forward to it as a million Christmases wrapped together. It is another sort of birthday. I hope it will give me parts of motherhood that have been missing these last months. I will be able to pick her up, something that is so natural yet out of my reach with an ET tube. We will be able to hold her EVERY day once she is healed and not have to take turns. She will be able to move her head and use her mouth for pleasant things. My sweet girl will not make herself sick with every position change. For the first time in her life she has a chance at being comfortable. I know when it comes time to send her to the OR I will be standing there with the fear every mother has sending her child to surgery. I will also be celebrating this very special milestone for Natalie.

I do not fear the trach care. Maybe that is ignorant of me, but we absolutely have to master caring for her. There is no other option so I will not waste energy fearing the inevitable. My only trepidation is that people will see the trach and not sweet Natalie. That her medical condition will be dominate and who she is as a person will be overshadowed. I have no intention of hiding it or treating it with shame. Her trach will simply be a part of her, a part that we are hoping brings her to a whole new level.

Say it with me-"Embrace the trach!!!!"

This week has been a period of adjustment for me. As we move into the more chronic phase of Natalie's treatment (and hopefully it will remain this way), I have more time to think and look ahead. So much of the past few months has been trying to get her through each day. When your focus is on survival it is easier to push aside thoughts of the future and what it may hold. We were just hoping to have a future.

Now we have a long list of issues that need to be addressed in addition to her more critical health problems. Her eyes, kidneys, heart, foot and digestive system all need attention. Her head will most likely need reshaping and the ET tube has done damage to her jaw and gum that I have not been able to confront yet. No one can tell us what to expect from Natalie developmentally and that uncertainty is sometimes paralyzing. I know eventually I will find my footing and create the attitude and plan of attack needed for what is ahead. Until that happens, I am just a mother scared for her child and questioning my abilities to see her through all that is coming our way. I am her mother, so there is no question that it will happen, but my Lord what an incredible task this is. It seems we've walked a million miles to just to reach the mountain, and now the mountain itself must still be climbed.

I am a little reluctant to talk openly about my emotions these days, but I want this blog to be as honest as possible. I would hate for another mother in my position to read this and think that I don't have dark times and frustration. Parenting a critically ill child can be an isolating experience, so I do not want to cause another parent harm by leading them to believe I am chronically happy through this. Yes, my overriding feeling is gratitude that Natalie is still here with us today. I have met many mothers over the past few months who have said goodbye to their precious babies far too soon. We are not out of the woods, but she is with us still and every fiber of my being knows how incredible that is.

I would be dishonest though if I said that I did not also experience defeat, jealousy and trepidation. No one is meant to go through this. I have no special ability that allows me to watch my child turn blue several times a day and not be wrenched with dread. I am as normal a mother as anyone else and finding my way through is the hardest challenge I have faced. The past nine months have been unreal in so many ways. It is a constant effort on my part to not look back because I would collapse under the weight of all we have endured and lost. There are happy memories mixed in, but those are bittersweet and quickly lead to painful thoughts of how close we have come time and again to losing our daughter. We have flown from one extreme to the other....terror in the OR when she was born, elation as she exceeded everyone's expectations then falling so low a week later that we were told they were running out of options. One day it will get sorted out and we will have a way of looking at this time in its proper context. For now there is no spare energy for making my emotions any more than what they are at the moment. I ask for patience with this as I am very much a work in progress.

I wish I had some great philosophical thought to close this post with, but I am tired and I know you would much rather see pictures than hear me prattle on. So, here are the
happy things that keep me putting one foot in front of the other.

Counting down the nitric!!!! Hoping I can be there when they roll the tanks out.



Her vent settings, just for memories...all those wavy
lines are Ms. Natalie breathing! For what it is worth, she was on her back and upset so her O2 and respiratory rate were up. She knows how to get herself flipped back to her tummy.

Snuggles with Daddy

Just being cute and sleepy.

Annie, because this girl makes me as happy as she looks.

Wednesday, September 8, 2010

What do you get when you put 20 doctors in a room?

A plan (we hope!).

Over a month ago we were told that a fellow (neonatologist in training) would be presenting Natalie as a case study. The doctors meet casually to discuss her but they have not all been in the same room at once to bounce ideas back and forth. In addition to helping Natalie the fellows and residents would have a chance to learn from her case.

This afternoon one of our favorite neos popped in while Steve was visiting Natalie. She had heard of Natalie's progress and wanted to come see for herself. Lately we get at least one person a day who wants to come in and stare at her vent settings. She said "Did you know your daughter is famous?" Without our knowledge her case was presented today and over 20 doctors attended (along with some nurses). It was a packed room. In addition to the NICU doctors her cardiologist and all the pulmonologists were there. It is wonderful beyond words to have so many people invested in her.

They talked about Natalie for an hour and a half. I assume at least 40 minutes were devoted to her overall cuteness and spunk. Natalie sparks a good deal of debate and it seems there were 20 different opinions in the room. (As one doctor says, 2 neonatologists, 3 opinions). Nonetheless, they did all manage to sketch out a rough plan for the next few weeks. We had our meeting with the outgoing and incoming attendings tonight to discuss what is hopefully ahead.

SHE CAN GET THE TRACH FIRST!!!!! This week the attending nearly put me over the edge by saying they would do GI surgery first and needed more time to decide which one. I really thought if that was the plan they would have to call security to remove me from the building. It would mean at least 2 months more of an ET tube by the time it was all said and done. That is just not fair to Natalie and I could not take it.

Well, no one could see a good reason to hold off on the trach, although they decided running nitric through it was not desirable. Now she must be off it completely before they get her on the OR schedule. This explains why today she was bumped down to 9ppm a day early. By Monday she should be around 5ppm and they will do another echo to evaluate her pulmonary hypertension. If all is well the nitric weaning will continue as tolerated and we are looking at a trach within 2 weeks.

While working in that direction they will continue to ramp up her NG feeds (now at 15cc every 4 hours). If she tolerates it well she will receive a G-tube down the road. If not, they will do more tests and possibly go the G-tube/fundoplication route.

Here is a recap of her other issues discussed today and where they stand now (in no particular order)....

Club foot-Left foot does not appear to need corrective boot, right foot should be treatable without surgery. Natters is not a big fan of the boot but tolerates it. Anneliese feels strongly that she should be wearing two boots and wants them to make her another.

Wandering eye-Do not know if this is due to her not having enough eye exercise or her sedation. Could be just a normal baby thing. She will be evaluated by an opthamologist when she has her trach and the sedation is decreased some.

Pulmonary hypertension-The last echo shows the flow through her ASD (hole in her heart) has reversed, indicating that the degree of PH has decreased. The echo only gives a rough idea of her PH, but accurate testing requires a heart cath and no one wants that. Hoping she tolerates the wean from nitric oxide and that sildenafil (Viagra) will be able to keep things under control.

Clotting-Remember way back in the early days when we were awoken with the horrifying news that she had a blood clot and may need a foot amputation? Ah, all of our sickening NICU memories and all the dire predictions she has overcome. At the time they suggested she may have a clotting issue but nothing would be gained by knowing right then. The testing requires a lot of blood and she does not have it to spare. Since then there has been a lot of debate regarding whether or not she actually had clots. Some think so to the extent they would not approve central lines. Others insist it did not fit the clinical picture. Either way, Ms. Natters has another blood clot, this time in one of the veins near her heart. It is right were the tip of her PCS line had been. This is a known complication of central lines, so again there is debate about her possible clotting issues. The only treatment would be to put her on anticoagulants and that is not without risks. We are filing it under "will investigate someday."

Heart-She still has an atrial septal defect. At this point, based on its size they do not think it will close on its own, although it is always possible. This does put an increased strain on her lungs, but not so much as to make surgical intervention worth it right now. It also acts as a release valve of sorts should her pulmonary hypertension worsen. When they said it would most likely require surgical intervention one day I nodded and said "but that is a pretty simple surgery, right?" The attending looked startled and said "Noooooo....it is open heart surgery." I am sure she thinks I have a strange idea of noninvasive surgery, but really a fellow did tell me that they can close it with a heart catheterization. That depends on the size and location, and apparently it looks like Natalie may need open heart surgery to place a patch. This has been filed under "things that will be closely followed and dealt with years down the road." I figure if we have this to worry about some day then we are doing pretty well. Please feel free to remind me of this if years down the road I am a pathetic mess sending her into the OR. Wait, I am her mother. I reserve the right to be a mess during any invasive procedure.

Her lungs-Well, an enigma. Today they spent a lot of time debating why Natalie has had the course that she has. The pulmonologists still feel there may be underlying issues, but that the tests are too invasive. The summary is "Right now she is making much more improvement than we thought possible. Do not rock the boat. Stay the course, do further testing if she does stops improving and is big enough to tolerate more tests." The biggest mystery is why she has always required so much O2. No real insight, but hoping that with time her O2 needs decrease on their own.

Normally the course for Natalie would have been "oscillator to conventional to CPAP to nasal cannula (prongs in the nose)." She would have needed to come home with O2 but in my book that was a small issue. Now the plan is to trach her and keep her on the vent, even sending her home on it (we hope we hope we hope). Weaning from the vent now will become a gradual process. It most likely will entail adjusting her settings and letting her do "sprints" off the vent. The length of the sprints gradually increase until she is only on the vent overnight, and then eventually we kick the thing to the curb (with a very big thank you). Extubating is no longer on the table. Her lung disease is extensive and the only way to overcome it is to grow enough healthy tissue to compensate for the damage done by the vent. That is a matter of time, good nutrition and avoiding infection.

For what it is worth, we are a long way from her coming home. Assuming there are no more bumps in the road, she first needs to get her surgeries behind her. Her vent settings need to be stable and her O2 requirement needs to come down considerably. Even once we get the green light, it takes roughly 3 months to coordinate. She will need a lot of medical equipment and nursing care. We will need to know how to be her nurse and meet all her needs.

I hesitate to even remotely speak of discharge, as I do not want to jinx anything. I'll stop talking about it and address it when it is actually on the horizon.

As for Natalie this week, she had another stellar blood gas so her PEEP was lowered from 6 to 5 today. Incredible, especially since I heard several times over the past week to not expect any more adjustments to her pressures. Her rate is still 20 (wait....did I already tell you that? Her rate is as low as it can go on this vent) and she seems to be tolerating it well. Her O2 is up a bit, but not so much as to be alarming. She is spending more time on her back and that always annoys her enough to increase her O2 needs.

Today at our meeting the attending told us she never would have predicted how well the past 2 weeks have gone. She said if someone told her this is where we would be she would have been shocked. I told the incoming attending (Dr. D-one of our favorites and we get him for 3 weeks) that Dr. L had covered a lot of ground and we expected the same from him. He laughed and said "I don't think that will be possible. If she continues at this pace we'll just send her home."

In non medical Natalie news, I have had several very sweet visits with her. One night I could not make myself leave until nearly 3AM. She was agitated and every time I tried to stop rubbing her back she would get upset all over again. Last night when I saw her I placed my arm over her body and held her right hand. She put her left hand on my arm and pushed against it. She is getting much busier with her hands. Today she could not fall asleep because it was far more interesting to play with her hands and bat her blanket. When she did fall asleep she annoyed herself by sticking her finger in her ear. So darn cute.

She loves listening to her music and books on tape. One nurse said she realized that every time it got to the end of the recording she desatted when Steve told her goodbye. She thinks Natalie has realized that him saying goodbye means the recording is about to stop and she becomes upset. Now the nurse stops and rewinds before the ending.

Annie is doing well and continues to love being a big sister. She is so patient and understanding for a toddler. She is also a hoot. I'll leave you with the song she sang to me at dinner tonight...

Annie: I help you and you help me, we're a special family. I love you and you me, we're a punchy family!"

Me: What?

Annie: I love you and you love me. We're a punchy family. I punch you! (whacks me on the arm)

Kind of glad she did not sing this in front of the NICU social worker tonight.

Friday, September 3, 2010

Friday and Life is Good

I met with the attending yesterday and she said pulmonology is happy with her getting a trach at her current settings (pressure 22 over 6, rate of 40). She did not think she would try to lower the rate any more than 35 for the time being. The attending wants to hold off a week or two on the trach so she can take advantage of the cuffed ET tube and practice feeding into her stomach. Yikes. No one but the doctors thinks feeding into her stomach is a good idea, but there you go. The loose plan is to see how feedings go and then talk over options with the surgeon. She will be having surgery in 2-3 weeks, whether it is the trach or some kind of GI procedure.

Yesterday they went down on the nitric to 13 and put off lowering her rate until evening. Late last night she was up in her Os so they put it off further. I made Steve make the morning call today because I was too nervous. He's on a streak of good morning updates so I hoped his luck would continue.

They lowered her rate to 35 and she had such a great blood gas that they lowered her AGAIN overnight to 30. That is exactly half of what it was last week. Her O2 is in the high 40's, so no major change there.

She has been fairly comfortable and resting a great deal. One of her primary nurses insists that it is "sleep and breast milk" behind her recent improvements. It has been a remarkable week of watching her have visible improvements. Her doctor warned me that the improvements will slow down soon and from there on it will be a slow process but for now we enjoy watching Natters kick butt.

Speaking of butts, she has tolerated returning to feeds very nicely. She overheard them discussing giving her a suppository and responded by filling 4 diapers in one day. Go Natters!

She did develop a little rash on her neck and that needs to be completely cleared up before the trach as it is right where her trach ties will go. It was very funny watching the NICU respond to a simple rash. The nurse went to discuss it with the team and soon there was a 2nd year resident, a 1st year resident and a medical student standing over Natalie with the bright lights on. There was a lot of conversation and they settled on applying an anti-fungal cream (that the nurse already said she needed). About 15 minutes later the fellow came in and examined her and suggested the same cream.
I have never seen so much fuss over a simple rash. Steve thinks they were all excited because she actually had a problem they knew how to address.

Oh, and she lost a little weight so she is now up to 25 cc an hour. I need to increase my pumping or this little girl is going to surpass me. They have not fortified her feedings since the NEC but according to the last attending she is growing "like gangbusters." I believe that is the technical term. She is nearly 10 lbs. This is amazing for a preemie who is battling such severe lung issues. She is finally on the growth charts (barely, but she's there).

Well, this update was a little longer than I thought but I was so excited about her rate change I wanted to share. They may keep her at this rate for awhile so she does not have to work too hard.

I am working on my patience and accepting going forward without a plan. Much of this journey has been responding to crisis so being in a position to take our time with decisions feels strange. There is too much room to mull things over and anticipate. In the meantime, Natalie continues to be remarkable and absolutely adorable. I need to concentrate on that and focus on the present.

Wednesday, September 1, 2010


I can not believe it is Wednesday already.

Monday Natalie had a quiet day but a long evening. When I got there the nurse had managed to get her into her "One Brave Chick" onesie and then wrapped her in her lion blanket as further proof of how tough she is. I wanted to take a picture but was anxious to finally hold her again so decided to take the picture after. Foolish Mommy. She settled right into my arms and her O2 saturation actually improved.. Only 110 minutes later her IV failed to flush and she had to go back to her crib so it could be replaced. Before being moved she managed to cough up a good amount of secretions onto her onesie so I opted to not capture the moment with a picture. I need to remember to never put off a good photo op.

Poor Natters has her mother's veins and what should have been a simple procedure turned into hours of IV attempts. I wanted with all my heart to tell them to leave her alone but she needed it for fluid (because some punk resident chose to increase her feeds at a snail's pace). They did decide to ramp up the volumes faster so by Tuesday morning the IV was no longer necessary.

During a break in the IV attempts I met with one of the pulmonologists. They work with the neonatologists but won't be involved on a daily basis until closer to discharge (a word I hardly let escape my lips). Dr. Voter was asked to evaluate Natalie for a tracheostomy. She felt that, especially considering the recent extubations, now is a great time to think of giving her one. She said that like everything else there is risk and we won't know until we try. Her biggest concern is her ability to ventilate well with it but it is worth taking the chance.

On the upside, Dr. Voter said Natalie is a different baby than the last time she saw her. She is doing much better than anticipated. Coming from a pulmonologist that was music to my ears. Apparently Dr. Voter was working the night Natalie needed her surgery for NEC and she strongly advised them to not do the laparotomy. She remembered that it happened on a Thursday night and when she came in on Monday she was stunned that Natalie was still with us. This has been the theme of my week-everyone wants to recollect her NEC episode and how they thought she would not pull through. At our meeting last week the surgeon kept saying "I did not know if we would get her through the night." Looking back I probably should have been more afraid than I was, but even then I had a feeling she was going to surprise them.

On the downside, Dr. Voter says the future is very hard to predict, especially as they do not have a good sense of why Natalie is as sick as she is. The pulmonology group does not think that the BPD or hypoplastic lungs are enough of an explanation. They have felt for some time that there might be another underlying lung disease but the only way to know for sure is to take a lung biopsy. This was news to me. She does not feel Nat would survive the surgery so it is a pointless idea. At the same time, she feels Natalie is in a place now where she can make improvements and that is hopeful. We discussed all the recent vent weans and she said "Go Natalie!" Natters responded by sleeping soundly and waving her arm. This sweet little baby has no idea just how amazing she is.

Yesterday I met with the GI surgeon, Dr. Lee. He feels that doing the funduplication without knowing for certain that she has reflux is a decision based on fear (which it is) and he feels that there are also enough fears about the surgery itself to warrant holding off. We talked about a G-tube with a catheter that would run to her intestines (as someone mentioned in the comments) but that is a temporary solution. Really we do not know what to do about her feeding. The neonatologist says that while she has a cuffed ET tube the risk of aspirating is low so today they are supposed to start very small feeds into her stomach to see what happens. I can hardly think about it. The whole thing makes me so nervous I wish I could fast forward a few days.

As for the trach, the attending is happy with her pressures on the vent but not the rate. I asked if she needed to be as low as 20bpm but she said she would be happy with 30. Last night she was weaned down to 40 (they go in increments of 5) so really she does not have much further to go. That being said, the doctor feels it will be another 2-3 weeks before she is ready for a trach. That time estimate just about did me in so by the end of the conversation she was predicting 1-2 weeks, I imagine to shut me up. Maybe they want more time with a cuffed tube to practice feeding since once she has the trach her tube will be uncuffed. I don't know. What I do know is I am so past ready for her to have a trach and be comfortable.

Natty's blood gases have been stellar. They have barely budged with all the changes they have made to her settings in the past week. Her oxygen requirements, however, have been creeping up and she is back to the high 50's low 60's. The attending now believes we can get her to a trach without steroids unless her O2 requirements can not be controlled. That is incredibly good fortune. A few short weeks ago everyone thought she would need steroids on top of experimental medications just to get off the oscillator. Here she is working her way to a trach all on her own.

She reached full feeds again yesterday afternoon and finally had a dirty diaper this morning. It is incredible that one self extubation led to her coding and then 4 days without food. Can you tell I am exasperated?

Natters has made incredible progress this week and for that we are thrilled. We hope that with rest and full feeds she can continue to grow and heal just as she has been.

Thank you all for your continued support and kindness. We are so fortunate to be surrounded by such wonderful people!!!!