This was a very big day, and I have a lot to say but will condense it as I am about to crash.
To back up a little, on Monday morning Natalie had a repeat X-ray and although there was no improvement the doctor decided to resume her at full feeds. He wanted to avoid her needing IV access and felt that her stomach issues were most likely due to a stomach virus or some other illness.
After returning to feeding we anxiously watched her girth measurements. She seemed to be tolerating everything well but needed glycerin shaves to help in the pooping department. This has never been an issue for her so we were a little nervous.
Meanwhile, her O2 requirements were still up and her CO2 was climbing. We started discussing using steroids sooner than later as she seemed to have hit a wall.
Last night (Wednesday) I called around 10PM and the nurse said her girth was up a little. They ordered a shave hoping that a BM would clear things up. I asked for them to call us if anything changed with her stomach.
At 3:30 this morning I was still awake in bed when the phone rang. I can not put into words what an awful sinking feeling that is. We both immediately shouted obscenities (I think even my mother will forgive me this). Steve answered but I did not have to hear the doctor to know. Her stomach was distended again and the X-ray showed enlarged loops of bowel. They moved all her meds back to IV and she was NPO (nothing by mouth). So much for sleep. I spent the rest of the night trying to keep my own stomach calm.
This morning we met with her doctor. He felt that she needed an upper GI to rule out strictures. It made no sense to keep trying her on feeds only to take her back off.
The catch? The first part of the test must be done in radiology and she can not be transported on an oscillator.
We were given two choices-switch her to conventional for a few hours and see if they could stabilize her long enough for the move. The second choice was wait until next week when the steroids had taken effect and she would have a better chance on the conventional.
We decided to go ahead and try today thinking that the worst that would happen was she would have to be put right back on the oscillator. Really they felt she may not even last 15 minutes on it, but there was little risk of her losing ground.
Luckily Steve was able to be there for the vent change so we could hold hands and support each other. It was an incredibly tense situation and we were both anxious to the point of nausea. I gave Natalie the same pep talk I have given her since she was a little fetus and a kiss for good luck. Then we stood by helplessly.
How did Natalie feel? Well, she slept right through it. She wiggled her toes and had hiccups. We watched in disbelief as her O2 settings went from 100% to 60%, then 50% and eventually 40%. Clearly she could oxygenate on the conventional, but the real test would be her first blood gas.
Earlier in the day she had an arterial blood gas so they could get a better idea of her respiratory status. An arterial stick is risky so she rarely has one. This morning her ABG CO2 was 74 while on the oscillator. This is well above where it should be.
Her first CO2 post vent change? 58. That is a capillary sample, so it is expected to be higher than an arterial stick. I told her she was ventilating with finesse.
This was not the first time a blood gas has brought me to tears. After that the mood in her room was giddy. Natalie herself got into the spirit. She woke up and was clearly confused by the change. What happened to the noise? Why wasn't she shaking? It was precious watching her wake up and see her little eyes trying to figure out what was going on.
From that point Natty was wide awake and curious for about 4 hours straight. This despite multiple attempts to sedate her. Position changes are a whole new game. It is as if we went from walking on a tightrope for months to walking on solid ground. She can be held upright. It no longer takes 3 people to flip her over and suctioning is not a 2 person task. She does not have to face in only one direction (looking at that beastly oscillator).The nurse sat her up and she moved her head from side to side to look around the room. Natters kicked and waved her arms. She was delightful. I felt like I had a baby, not a sick child. Yes, she is on a vent and has an ET tube. Yes, instead of a bow in her hair she is wearing an IV on the top of her head. Moving her through the hospital required hours of planning and preparation. Being on the oscillator for so long has changed my perspective so that all those obvious signs of illness were just normal to me. Walking her through the hospital I felt the pride and protectiveness of any mother taking her child out in a stroller for the first time. This is where we are in life and this is our new normal.
Today Natalie left the 3rd floor of Strong Memorial for the first time since her birth. It is the only time she has left the NICU since she entered it on April 21st. Her eyes blinked in the bright light but she did not close them. She looked around and made eyes at people passing by. One woman said she wanted to pick her up and bring her home (I don't blame her-Natalie really is a beautiful baby).
We made an interesting scene. It took six adults to get this little baby down to radiology. She rode in her crib while the iNO tank and vent had to be pushed close by and everyone had to maintain the same pace. The vent was actually disconnected and they used the neo-puff (instead of hand bagging) while she was on the go. Natalie tolerated it very well.
The procedure itself went smoothly and Nat was not bothered. The nurse said she seemed to enjoy being moved from side to side. We managed to get her back to her room without any excitement. Luckily all the emergencies that were carefully planned for never took place.
Coordinating the move was an all day event. By the time she was back it was 4 in the afternoon and she was still wide awake. I imagine she will sleep well tonight.
Since she has tolerated the vent change so well Natalie will remain on the conventional overnight(!). We are hopeful that she can continue to do well and will not need to return to the oscillator (this return would be temporary...steroids are still in the plan for next week).
It was a crazy day. From the phone call to the first meeting with the doctor we were devastated. That quickly turned into euphoria when she did well on the vent. I had to remind myself that this was all because she may have strictures and that is no happy thing. Well, I take success where I can find it. She could have done poorly on the vent and still had strictures.
As for her intestines, so far the X-rays have not shown anything concerning. She will have another film around midnight and then again in the morning. We should have a final answer by tomorrow night. Honestly I will not be surprised if they find an issue but we are trying to not get ahead of ourselves.
She has gone up a bit in her Os this evening but that was expected. Her last blood gas was also not as good, but she had a very eventful day. She is also on half the dose of Lasix as she is used to, so that may be contributing to her respiratory status. Right now we are bracing ourselves as we tend to when something goes well.
OK. I slept for about one hour last night and fell as though I have been put through a rock tumbler. I need to rest up for tomorrow........if Natalie is still stable I get to hold her!!!!!!!!
Please keep good thoughts and prayers for our super girl. She never fails to amaze me.