The I Know Natalie Fund

We have spoken to the kind people at Golisano Children's Hospital and have established "The I Know Natalie Fund" in an effort to raise money for the NICU that cared for Natalie. We are trying to raise enough funds so that Natalie may be permanently memorialized in the only home she knew.

All donations can be made payable to Golisano Children’s Hospital. Please include a comment on the memo line of the check or a separate note indicating you would like the donation to be included in the ‘I Know Natalie Fund’ or made in the memory of Natalie Teegarden. You will receive notification that your donation was received and a tax id number.

The address for donations is:

Golisano Children’s Hospital

300 East River Road

Box 278996

Rochester, NY 14627

We can not thank you enough for considering making a contribution in her memory. The NICU was our home away from home and we know how much they will benefit from any money raised.

As for us, I keep telling myself to put one foot in front of the other. The trouble with that philosophy is first you have to get yourself back on your feet to begin with. I suppose that will take time and work on our parts. We will never again be the people we were before Natalie and now we need to figure out who exactly we are without her.

We appreciate your continued thoughts and prayers. This is of course a very difficult time for our family and we do appreciate all the ways you've reached out to us.

Services

I wanted to share some photos from her service as well as the eulogy I read. I am not up for writing anything else right now but thought those who could not attend might appreciate knowing what was said.

Also, thank you so very much to everyone who has been taking the time to send "I Know Natalie" postcards and notes of condolences. We have been reading them together each night and it gives us more comfort than you know.

Flowers from Mommy and Daddy

Flowers from big sister Anneliese

Some of her special items

Photo displays

Natalie Evelyn Teegarden left us a few days shy of her 6 month birthday. That may not seem like a life long enough for a eulogy, but there is more to say about this wonderful child than I can ever get out at once.

September 24^th of last year I was filled with anticipation and despite Annie being cranky for lunch took a pregnancy test. I carried Annie and the test downstairs. It was in the stairwell that I saw a very pink line develop and knew that we had a baby on the way. A very wanted baby.

From that moment, we have been Natalie’s parents and every day since have based our decisions on her best interest. I was as cautious as I knew how to be. Sometimes, despite your best efforts, a body can fail. Mine did and Natalie lost the amniotic fluid she needed to grow healthy lungs.

Sitting in the doctor’s office, leaning against Steve I could not accept this. I knew it was serious but somehow trusted our baby could make it. If it was at all possible for our child to survive we would fight on.

Natters was always a tenacious child. In her ultrasounds we saw a powerful heartbeat, strong growing limbs and adorable mannerisms. It is impossible to not fall in love with your growing baby, even when everyone around you warns that she may not stay. As terrifying as the pregnancy was, we did our best to treasure that time with Natalie. We knew it may be all we had.

She accompanied us on wheelchair rides, was there when we decorated Easter eggs and her sister snuggled up against the bump of Natalie for movies and stories. I read to both my girls and loved having them close. Those are memories I will always treasure.

While on bed rest, Natters was my constant companion. My buddy. My belly was not the big round one I had with Annie, but I could not keep my hands off her. I focused on every movement, took in each heartbeat check. We developed certain habits-her foot pressed out against my right side and we had a game of pushing against one another. While I was sleeping, she would relax and spread her limbs out, then startle when I first spoke or moved in the morning and curl herself back up in an instant. When I showered, one of the few bits of time I was out of bed, I would rock back and forth, trying to mimic the rhythm I would one day rock her in a chair with.

If I could, I would have kept her inside until she was ready for kindergarten. As difficult as bed rest was, I would never be ready to send her out to this world where I could no longer breathe for her. It was one of the hardest things I have ever done, going into that operating room not knowing. Yet Natalie was born squeaking, if not crying. She rallied quickly and far exceeded everyone’s expectations. The exuberance of that day is one I can never forget, yet is painful to look back on. It was so full of promise that has since been stripped away. Despite all predictions, Natalie was born with lungs to live on. I believe that with all my heart regardless of the fact we ultimately lost her.

I am not going to detail the many obstacles she fought her way through. Natalie is not a medical case, she is a daughter, granddaughter, sister, niece, cousin and her own person. We did not get a lifetime to know her, but we will never forget all the things we learned while she was with us.

Natalie knew what she liked and what she did not. She was rarely up for compromise and mostly got her way.

Natalie loved being on her belly. She loved having hands placed firmly on her back, and as she grew older she would relax as we rubbed her back or patted her with face masks. She also loved having a hand cupping her head and eventually liked having her hair stroked.

Natalie absolutely hated being wet. I think the words “Natalie loves her Lasix” must have been uttered hundreds of times in her room as she was relieved of soaked diapers. This always amused me, as her big sister was the opposite and could have sat in a wet diaper for a week without complaining.

Natters had comic timing with her diaper changes and many times surprised her father and nurses mid-change. I have never seen one baby go through so many blankets. This secretly pleased me as doing her laundry was one way I felt a bit of normal parenting. I never had the pleasure of handling one of her explosions, but I do have a great memory of her peeing all over me while we did kangaroo time.

Natalie loved being snuggled in by “Freddy Frog” positioners and sometimes had as many as eight surrounding her. For a baby who rarely had the freedom to be held, she was a snuggle bug and enjoyed the feeling of being wrapped up. She did settle down when swaddled, but since she tended to be a hot baby did not get to enjoy the sensation nearly enough. I loved wrapping her up into a little burrito and seeing the relaxation on her face whenever we did get a chance.

Natalie loved holding fingers. She would grab on, sometimes holding still and sometimes waving her arms and taking your fingers on a ride. We have wonderful memories of each of us holding one of her hands, standing on opposite sides of her and soaking up the sight of our beautiful daughter. I may not have mentioned it, but Natty was an exceptionally gorgeous child. Sometimes we had to ease our hands away when it was time to go. This could take several attempts, as when she realized your finger was gone she would search it out again and become agitated. We would sometimes have to do quick changes of hand to relieve one another for breaks.

Natalie loved music. She mostly listened to classical, and would move her fingers as if playing a piano. I always saw her as becoming a musician and fantasized about far off recitals. Natters even enjoyed my singing, which we did not get to do often enough for lack of privacy. “You are My Sunshine” and “The Rainbow Connection” were two of her favorites.

She loved having her hands as playthings. Sometimes she would keep herself awake for the sheer joy of stroking her cheek. Those same hands would sometimes jab her in the ear and make her cry, but like all babies her age she never realized she had done it herself. Natalie loved exploring the different textures of her special pink booties and security blanket. I remember the first time her nurse placed her naked legs on the silkiness of the blanket and how she kicked with vigor I had never seen before.

Any of these new sensations and experiences were wonderful to observe. She was sometimes given just a taste of milk on her tongue or lips and we loved watching her respond and investigate.

Natters was starting to work on a real social smile. I saw many, many smirks after her trach, but only one small smile she flashed at her grandfather. She did have brilliant smiles while sleeping….smiles so radiant I felt once she unleashed them while awake we would all be at her mercy.

She did not care much for the equipment that was attached to her face. Natalie had quick hands and could do a sneak attack on her ET tube faster than you could respond. Sometimes she liked to just rest her hands around the tube, but that was too risky. One nurse had the ingenious idea of giving her a bit of IV tubing to hold onto instead. Nat would grasp the tubing, relax in her presumed victory and fall asleep. After her ET tube was removed she set her sights on the ND tube in her nose. At every opportunity she would hook her finger in behind the tube and yank. We marveled at how she knew to get at it.

Natalie had such bright dark eyes. When she opened them my heart skipped a beat. She was there. Despite everything she had endured, when you looked into Natalie’s eyes you saw her. And she saw you. Some of the last times I spent with her awake she stared at me as if memorizing my face. I remembered a story from another mama who thought their baby was remembering her face so she would recognize her in heaven. Natalie’s gaze was so intent and I hope that she did have us memorized as much as we have her engraved in our minds.

Natalie loved being read to and responded well to her “books on tape.” She also loved to look at the pages, especially The Very Hungry Caterpillar. Once when she was having trouble falling asleep I held the book up for her to see. She would finally drift off and I would lower the book, only to have her open her eyes again searching for the pictures. Our plan for Halloween was to dress Natalie as the caterpillar and Annie as the butterfly.

Natalie has a very proud and sweet big sister. Annie had been anxiously awaiting Natalie’s arrival before her birth. All along she has had big plans for Natalie-taking her to the zoo, teaching her to walk, letting her sleep in her room. Annie was able to visit Natalie several times in the NICU and always remarked on how sweet and cute “little Matawee” is. The last time we visited as a family I rocked Annie and we read Click Clack Moo Moo, Goodnight Moon and The Runaway Bunny. Annie then sang “I see the moon and the moon sees me. God Bless the moon and God Bless me” to Natalie several times. Annie is 3 years old, so understanding this loss must be so difficult….even as adults it is impossible to comprehend. She speaks of her baby sister throughout the day and we have had long talk about what has happened. The other night she told me “My brain send me messages and I send the messages to heaven so Matawee can read them.” I know she will continue to be a loving and devoted sister to Natalie in death just as she was in life.

I must also mention Natalie’s faithful companion Sophie the giraffe. A gift from her Aunt and Uncle, Sophie was always by her side. Natty was drawn to her dark eyes and spots which earned Sophie a permanent spot near Nat’s head. She made a wonderful mascot and

She left the NICU twice, once on the incredible day she was freed from the oscillator, and once for the incredible day she was freed from the ET tube. Both times she was alert and taking in the sights. Despite normally liking her world quiet and dim, when out in the hallways she wanted to see everything going on. She always knew when there was a change in viewpoint and we loved watching her face respond to new sights.

Natalie never grew up and away from us as children are supposed to do. In that way, we still had the mother/infant closeness where it is hard for me to know where I ended and she began. When I held her in my arms it was always like being put back together again. My missing piece was returned.

We had always known we were up against incredible odds, but Natalie had a way of rallying and fighting through obstacles few people thought she would manage. I think this gave us a sense that while the road would be hard, she would persevere. The day we lost her I did not walk into the NICU with any more fear than usual. Even as I saw her as sick as she was, I thought we would find a way through. Sometimes, despite your best efforts, a body can fail. Hers did. The body failed, but Natalie did not. She was more than her respiratory status, more than the nearly perfect baby that held her soul.

From pregnancy until the end I gave Natalie the same pep talk during our private time. The words never really changed, and when we had these heart to hearts after she was born it was clear she remembered and relaxed to the cadence of my speech.

“Natalie is a good girl. A strong girl. A fighter. Mommy and Daddy are not giving up, don’t you give up. People will tell you you can’t do things. They are wrong, don’t listen to them. This is the hardest thing you will ever do in your life, the hardest thing I have ever asked of anyone. It will be worse before it is better. But I promise you, I promise that we are right beside you. You are not ever alone. When I am not here, you are in my heart and always always on my mind. If you can get through this, I promise you that there is a wonderful life waiting on the other side. You are so loved and wanted. We will make this up to you. We will make this fight worthwhile.”

We will not have that chance. We did not get to shower Natalie with all the pleasures life has to offer. I had told her of chocolate chip cookies and ice cream, of riding on swings and playing with her sister. Snuggles without wires and the feeling of being outside on a warm day. All the simple things I wanted her to know. That is lost now and is a void that can never be filled.

The pain of losing our daughter is searing. It can bring me to my knees. It is impossible to understand. While there is no sense to this loss we want her memory and her name to go on. We want the spirit of Natalie to bring good things to this world. It was a place she deserved to live in, a place we will strive to make better because she no longer can.

When you think of Natalie, think of the baby whose eyes lit up the room. Think of the sweet soul who made so many people fall in love with her. She is more than what she went through, more than what she endured. Natalie Evelyn was a warrior and a charmer all at once. She is the strongest person we have ever known and I hope we can take strength from her example as we move forward.

We must continue on, but not past Natalie, not ever leaving her behind. She is coming with us, not in the way she should have, but in the best way we know how.

Balloon release at the cemetery

Details

There are things that we don't want to happen but have to accept, things we
don't want to know but have to learn, and people we can't live without but have
to let go. ~Author Unknown

First of all, your comments have brought such comfort to us and every time I see the words "I know Natalie" I feel so blessed. Thank you so very much for loving our daughter. Your taking the time to write us is appreciated more than we can say. We have reread the comments over and over and are always overcome with emotion.

The link for Natalie's obituary is on the funeral home website. You can find it here and here. It will appear in the Democrat and Chronicle tomorrow. There was a great deal of confusion surrounding it as I somehow attached the unedited version when I sent it in. By the time we were made aware we were 30 minutes from home and trying to pick out Natalie's clothes. There was no time to return before the deadline. Writing my daughter's obituary was a near impossible task so I suppose I am grateful that it is done at all. It would never have been perfect enough to match her regardless.

Clearly this is not a position we knew we would be in and there are many details to attend to. We are in the process of starting a non-profit organization called The "I Know Natalie" Fund. This requires the assistance of a lawyer and some time. Our intention is to collect money and provide a large donation to the NICU that was Natalie's second home. In the coming months we will be doing some fund raising efforts through the non-profit account as well.

Some of my dear friends surprised me today by setting up a donation site in Natalie's honor. Without us discussing it beforehand, they called the website "I Know Natalie." Great Snoogle minds think alike.

Thank you again for helping to hold us up. Losing Natalie hardly seems real yet at the same time will hit me with great intensity out of nowhere. I keep wanting to call the NICU for an update or drive over to visit her. Twice I have caught myself reading what others have written about her and thought how wonderful it will be when she can read it someday. Then I remember there is no longer someday. Our future is not at all what it should be. The first night I would not fall asleep because I could not face waking up and realizing it all over again.

There are a million things to say, and at some point I will share the story of Natalie's last day. Right now I don't know what to keep to myself and what to set in print. We are moving through this very strange process....as everyone says, you are not supposed to lose your child. Choosing a burial site is all at once precious, surreal and agonizing. These are some of the last concrete things we are able to do for her and we want it all to be the best it can. We have to find ways to endure the unendurable.

Saying Goodbye

Natalie Evelyn Teegarden passed away unexpectedly the afternoon of October 16th. She was in my arms and in no pain. I suppose that is the most one could hope for.

I so appreciate all the love and affection people have shown our daughter this year. Our family is blessed to be surrounded by the strength of others.

If I could, I would like to ask that when people share with us in the days to come that it is not suggested that there was a reason for her loss or that God needed her more than we did. Natalie was a very loved and desired child, she would have shared a wonderful life with us here on earth and that is all we wanted. Please forgive me my candor. It is just that I am broken in a million pieces right now and do not have it in me to nod along and agree when I do not. My child should still be here in my arms looking forward to an abundant life. I know it may be hard to find words, so please do not worry trying to find the perfect thing to say. What we need is to know that Natalie is loved, that she will be remembered and that her life meant something to others.

I have one other request. Over the past several months, we have been humbled and amazed at the people who knew Natalie, cared for her from afar and supported us. If you think of her in the coming days, please consider sending a postcard with the words "I know Natalie" to

Natalie Evelyn Teegarden
120 Parkwood Rd
Rochester, NY 14615

As I am here trying to make myself understand that she is physically no longer with us, I am so afraid that our daughter will be forgotten, or that proof of her life will not be known to others. It would mean the world to me to hold in my hands evidence that Natters is still in the hearts and minds of others.

Thank you thank thank you for never letting me think we were on this journey alone. I am so very sorry.

Boomerang

was nervous last night when Steve stayed at the hospital so late. I thought she wasn't doing well and he was waiting for her to stabilize. I worked up the courage to call for an update and Natalie was doing very well. Just during our conversation she went from 84% FiO2 down to 78%.

I called this morning and overnight she went as low as 60%. Wonderful. During the morning she was as high as 75%, but that was mostly when she was upset. The nurse mentioned that she was fussy and her temp was up (38.2). They thought she was agitated due to the new meds and attributed the temp to the agitation. Despite hearing that she was cranky this was the best update we've heard in some time. Certainly it was light years better than yesterday.

Her nurse called a few hours later to say that Natalie's temp was now 39.3. It has never been that high. Now they attribute her crankiness and the temp to infection. Blood cultures, urinary cath and culture, CBC, CRP......waiting to hear back on results. They are also going to take a look at her ears. I am very much hoping that she has a basic ear infection but know better than to get my hopes up. While she is going through all the unhappiness of being poked and prodded she is back at 100%.

It's Always Something

Nat, Natty, Natters, Baby Tee, Natalata-dingdong...Natalie has a lot of names she answers to. I sometimes call her Cassius Clay in honor of her fighting skills or Natalie Evelyn because I love her entire name. Now I am adding Roseanne Roseannadanna to the list as truly it is always something (oh, and I love love love Gilda Radner).

This morning I held my breath before I called. When the nurse answered I immediately knew things were not good just from the sound of her voice. She had spent an hour trying to get Natalie to saturate above 70%. They had just d one a chest film and were waiting for results. About a half hour later Steve called-the film was awful and we needed to go in. Luckily Steve's mother was available for babysitting.

When we arrived she was doing a little better but never got a chance to rest. This part of the day is a blur to me. She was still struggling with saturation and there were no answers. They did blood cultures, CBC, CRP and trach aspirates for viral and bacterial cultures. The X-ray showed big changes that could be attributed to infection or worsening lung disease.

Over the past few days (or week?) she has been sounding increasingly tight, much like someone in the midst of an asthma attack. She does receive albuterol to help with this and always has a good response to it. They have been gradually increasing the doses she gets a day. She also gets a nebulizer of pulmicort, which is a steroid to help combat inflammation.

The pulmonologist came in to examine her and formulate a new plan of attack. Her albuterol is now given continuously through a drip into the nebulizer (she has a very nifty inline nebulizer attached to her vent). He added prednisone (oral steroid) to help with inflammation. If these changes are not enough, she may get another nebulized med and an IV drip of aminophylline.

Those changes started a flurry of activity. Then her nurse stepped out to speak with the attending and returned saying "I just told Dr. S that I love him. Why do you think I would do that?" I was so hopeful it was because the new trach had arrived. All morning I was fighting the urge to go to the loading dock and beg them to rush it through. The attending himself said "You know if I had a tracking number I would be checking it all day."

Well, the trach had in fact arrived just after Steve left to pick up lunch. One of the last things he said before leaving was "I bet the trach hasn't even shipped yet." Finally I got to call him with some good news.

Suddenly it was Christmas morning in Natters' room. Dr. S opened the box and handed the trach to me so I could check it out. A group of residents and respiratory therapists gathered outside her room to prepare for the change.

Now, here is a little lesson for everyone on advocacy when someone you love is in the hospital. While the group was assembled outside I went over and grabbed the "owners manual" for the trach. This is just me. If I buy a new microwave I will research it for hours and read the manual cover to cover when its home. Certainly I wanted to know what information came with this new trach.

Her cuffed ET tube was inflated with air. This cuffed trach specifically recommends inflating with sterile water. I went to the group and pointed this out. No, no, no....they always inflate with air. Well, you also always use Shileys. For Pete's sake, you've never used an Arcadia brand trach, why would you think you know better than the manufacturer??? I had no intention of leaving the room with them planning on using air when it says water.

The doctor laughingly thanked me for reading the book as they shooed me from her room. The change went very smoothly and her air leak is almost completely gone. In some positions it returns a little but by far it is a huge improvement.

From there her day slowly improved, in part because she was finally left alone. One of her primary nurses developed a position that she loves to sleep in. We have been teaching it to other nurses over the past few days. In general if you get her set up this way and then pound on her back with a face mask (the cushy kind used in hand bagging) she will saturate better.

When I left she was at 90% FiO2 and saturating in the low 90's. This is considerably better than 100% FiO2 and saturating at 50-70%. I am sad that this is what we need to see as good news today, because 90% FiO2 is A LOT of oxygen, and not what we were hoping for post-cuffed trach. On the other hand, it seems she has picked up some other complications in the past few days so we need to be happy that we are still here and fighting.

The blood work shows no evidence of infection and the viral cultures will take a long time to come back. There is also very little more they can do if this is a viral infection. In a way her having an infection would have given us a clearer path to recovery. As things stand now there are no easy answers.

The attending did say that if micro-aspirating has been a contributing factor it will improve over time with the cuffed trach. That is not an immediate fix-all as the inflamed tissue would need time to heal.

I often wonder if people find this blog depressing and are reluctant to visit. I so wish I had nice shiny happy things to report. I do have pictures, though. Pictures always make frustrating posts easier to bear.

Natters reading up on bulls-eyes and her family

Sweet sleepy face

Natalie rocking the yellow ducky look

Snuggling with my mother...her first time being held by a grandparent. We look forward to her being stable again and getting her into everyone's arms. By the way, as soon as they put her in Grandma's arms she started to saturate high!
"I'm super cute. What else do you want from me?"


Annie celebrating her birthday at preschool

The Big Bass Wheel game......So, our family sometimes does have great luck. We were celebrating Annie's birthday at a local play center and Anneliese hit the jackpot-1000 tickets. It took about 5 minutes for all the tickets to dispense. Drawn by her success, many other children came over to try their luck. Then my 5 year old nephew Keegan stepped up and once again hit the big one. The kids had a great time cashing in their tickets for prizes. There is a fantastic picture of Steve wearing a pink princess cowboy hat posing with Keegan in his manly hat. I would love to post it but I also enjoy minimal conflict in my marriage.






Tonight I also want to say that we are hardly the only family facing such a difficult course in the NICU. Over the past year I have become close to many other mothers and witnessed their struggles. Not all babies come home. There are no words to make that better and it never ever gets easier to hear of loving parents with empty arms. I think of those children daily and will never forget their strong spirits.

There are also amazing babies still fighting every day despite having incredible hurdles placed in their way. I am so blessed to know these babies and their mothers. The NICU is not an easy place for anyone to be, but some families are given especially long and challenging journeys. Thank you to the mothers who let me know I am not alone and let me lean on them during times like this. You are in my thoughts and prayers daily, sometimes hourly, and I hope one day we can all gather our miracle children together when this is just a memory.

Waiting

A week after deciding on a cuffed trach and we are still waiting. There were delays in getting all the specialists to agree and then find a vendor. This vendor works with the ENT clinic but not the hospital, so the hospital had to approve them as a vendor. Once that was complete, the vendor needed the hospital to jump through hoops to insure payment. sigh. Doctor finally begs them to Fedex the trachs already and we promise promise promise they will be paid for. They were supposed to be here today and we were very disappointed that we have yet one more day of waiting. They should be on the loading docks tomorrow morning and the neonatologist said if he had contacts down there he would have someone expedite it to the NICU.

There is no real change. She continues to struggle with oxygen saturation and no one knows why. She should be over the surgical set back, her pulmonary hypertension is no worse (according to the last echo), they even put her on an oral antibiotic for good measure after reviewing consecutive gram stains of her trach aspirates. Our last best option is the air leak, otherwise the explanation we are left with is disease progression and there is nothing more they can do.

We had a sit down with the social worker (love her) and the current attending (he has been fantastic). We wait to see what the cuffed trach does. In the meantime, we asked them to consult with some pulmonologists from larger hospitals to get feedback. We also asked for the first time if Natalie would possibly be better off in a larger institution. This is a touchy thing to suggest and the next best option for us (CHOP in Philly) is over 5 hours away. It would mean some incredible maneuvering on our part, and she would have to be stable enough for the drive. That being said, I never want to wonder if another hospital could have done more for her.

Dr. S is going to talk to people and see who the best consult is. We are waiting to see what happens when her air leak is under control. Waiting to see if the consult will have suggestions, waiting to see if another hospital thinks they can do more for her and if they are willing to accept her as a patient. Everything in me wants this air leak to be the problem and for her to make steady improvements right where we are. In the meantime, we wait.

I realize I have been talking about the cuffed trach and not explaining it. The diameter of her current trach (a basic Shiley model) is considerably smaller than the diameter of her trachea. A cuffed trach has a small balloon that is inflated around the shaft of the trach to minimize the air leaking around it. This is not without risks-the contact and pressure on her trachea can cause tissue breakdown. Developmentally it eliminates her ability to vocalize and will make tasks such as eating and swallowing a little more challenging to master. We hope the cuff is a temporary solution and that as her respiratory status improves the need for the cuff will be reduced.

We thank you for your continued prayers and kind words. I have received so many wonderful emails and notes of support. This has been a very trying time in the midst of a very long hard road and I so appreciate the kindness we've been shown.

Trying to find where we are

I may start talking in circles here, but things have been pretty hectic and confusing.

Nothing grew from her cultures, the fever subsided and antibiotics discontinued. A follow up CBC/CRP (because I begged) this morning still looks good.

Natalie started to do better Friday afternoon and overnight. In the morning she was down to 56% O2. They made a vent change (moving her to pressure control/pressure) and her O2 went up by 10%. A short bit later, another nurse was babysitting and Natalie had an event. She spit up, pooped and desatted down to 19%. That is AWFUL. The rest of the weekend was just as bad. Steve was with her until 3AM Sunday morning when she finally stabilized. She was "ok" until Sunday afternoon when things fell apart again. This time an X-ray showed her ND tube in her stomach rather than her intestines, so they attributed her event to that.

She is still not bouncing back. The new talk is that she may be microaspirating gastric juices. The surgeon came by last night and suggested we change course. Rather than G tube/nissen, which would be a pretty big hit for her recovery wise, he suggested a G-tube to drain gastric juices and a J-tube for feeding. The J-tube would go directly into her intestines.

Here's the problem....if her respiratory status is due to microaspirating and that can only be addressed surgically she has to be in a better place with her respiratory status before she can go for surgery. it is yet another awful catch-22.

As for the trach, the neonatologist thought a cuffed trach was worth a try. We are hoping that controlling her air leak will help matters greatly. There is an added bonus that it may help protect her airway if she is aspirating. It was a funny-this weekend while I was in panic mode people kept saying "Have you heard we are going to try a cuffed trach? It will be here next week and maybe that will help." Have I heard? Yes. I was the one who researched the trach and asked for it. Seriously. It is amusing that anytime we have a good suggestion the team immediately forgets where it came from.

So, this is where we are. I am desperate for this trach to arrive and hoping it will make some positive improvements. I hate where we are right now. This weekend was the worst kind of fear.

late night

I apologize for not updating during the past week. Sometimes it is hard when her status changes so quickly. For the most part she seemed to be doing better after the vent changes last Monday. She would sometimes get down to the high 50's in her O2 needs but would bounce right back to high 80's. Her O2 requirement seems very positional and possibly due to her large air leak.

Over the weekend they tried to change her diuretic again. They overlapped with Lasix but it still did not work. She once again has very wet lungs and is now on twice a day Lasix until that resolves. The past few days have been higher O2's again, sometimes getting back to 100%. There was a disastrous blood gas but that was blamed on the diuretic issue.

Tonight I went in hoping for snuggles but found Natalie to be running a fever. She tends to be a very hot baby normally, but this was above and beyond her norm. They ordered a full septic work-up and I waited around to see what came of it. Her white count is a little elevated, but no bands. Her CRP is 17, so a bit above her normal baseline of 2-5. As I was driving home I realized they did not check her ears, so I will call to remind them. That is a bigger baby issue and tends to be overlooked as a possible culprit. Maybe something brewing, maybe not. She is on IV antibiotics until the cultures come back. It was so hard to leave. She was at 100% and just not sating very well.

Tomorrow the attending is talking to pulmonology and ENT about possibly getting her a cuffed trach to manage the air leak. It will take time to arrange that even if all parties are in agreement. The hospital does not stock them and it needs to be sent in.

I am exhausted on every level. It is 3am and I need to get to bed because there is a certain preschooler who will be up before long. I just wanted to ask for prayers and some positive energy. I am doing my best to bring a happy face to her bedside and think that is what I need myself. I need to feel motivation rather than frustration.

I have nice stories of happy snuggle time with Natters and happy birthday celebrations with Annie but that will have to wait. For what it is worth, Natalie looks good and has been pretty comfortable. She does not look as though she is sick, so hopefully this is a blip and she will be rocking the under 60% FiO2 again very very soon.

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.

Weekend

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

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.

Recovery

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.

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.

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

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.

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.

Monday

Tuesday

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.