Tag Archives: 25 week baby

Big blue sky

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It was the last days of September and Malena Lola was riding a wave of positive progress.

She was growing and getting stronger each day. She was starting to hold her head on her own and was almost sitting on her own.She had a bonchoscopy done and the ENT was able to determine that she did not have tracheomalacia nor any other airway structural issues. This was fantastic news because it meant that in the short term we could wean her off the CPAP and in the long term it definitely made baby girl’s road easier.

It also meant we could finally be moved out of the PICU and into Unit 2, which was the transitional unit prior to going home.

On September 27th, 2011, for the first time since she was born 155 days ago, we were able to leave the NICU / PICU area of the hospital.

I was so happy and excited and grateful. This was an incredibly important milestone because it meant that my baby girl was strong and healthy enough to leave the critical babies area.

We moved from the main floor to the second floor. We were moving up in the world!

We were one giant step closer to home.

Our new room was such a lovely change as well.

We not only did we have more room but we had more privacy.

The nurses in Unit 2 only came in when needed, so that allowed me to spend time with my baby girl without constant interruptions.

I had always been doing all her care, and now I was also doing her trach care and suctioning as well,so we barely needed the nurses. They only came in to monitor baby girls sats and to bring me her meds and bottles when needed.

I had began relentlessly pushing the subject of my baby girl being discharged and after much debate, I had finally gotten the doctors to acknowledge that yes, she would be better off at home.

By October 3rd, 2011, I had also won another battle against the docs: I was now able to breastfeed my baby girl on demand ONLY. No more bottles while I was there. She would only be given bottles if she woke up hungry during the night when I wasn’t there.

My baby girl was thriving!

By October 8th she had gained more weight and was now 8.7 lbs! This proved to the doctors that she was fully capable of thriving while breastfeeding only and on demand.

She was playing on her side and doing tummy time every day.

They doctors were astonished. I was proud. Proud of my little girl for proving them wrong and showing them that sometimes it was good to have great expectations.

Now we needed to start baby girl’s sprints.

This meant taking her off the CPAP machine starting with 15 minutes and watching how she tolerated it. If she did well then we would add more repeats during each day and longer time.

The doctors wanted to wait and not make too many changes at the same time, but I insisted because I knew in my heart that my baby girl was ready.

I remember the meetings with the doctors as if it were yesterday… I remember the frustration I felt every time they said they didn’t believe my baby girl would be able to go home for at least another 6 months for two reasons.

First reason was that they didn’t think she would be able to be weaned off the CPAP completely, which meant that in order to be discharged for home they would have to find a way to provide her CPAP at home and they did not have the right machine available in the hospital.

Second reason was that they required two caregivers to watch baby girl at night once she was at home and they said this would usually take 6 to 9 months.

To me both reasons seemed completely ridiculous and did not make any sense whatsoever.

I would prove to them that my baby girl did not need CPAP and if she did, I would make sure we got the right machine for her to go home.

And as for hiring night time caregivers, I let them know that I was a Human Resources professional and that I could post, recruit, interview, hire and train two full time caregivers within a month.

I told them there was no medical reason for my baby girl to be at the hospital. I told them I wanted an immediate outline of the criteria and steps to ensure discharge as soon as she was weaned off CPAP and I had the caregivers in place.

I was already in the process of completing our Trach Care Course as well as Infant CPR Training, so we would be ready within a month as well.

They had no choice but to agree to comply and come up with a plan for discharge.

I had my momma warrior armour on and I was not setting it down until my baby girl was home.

By October 10th, 2011, baby girl was doing one hour sprints four times a day. She was doing amazing!

Once again, I felt a very proud momma. My baby girl was showing them all that she was not only thriving but truly ready to go home.

It was time to test the car seat and stroller to make sure she was able to breathe well in them.

Success!

On October 16, 2011, we had the most wonderful day yet. We were able to take baby girl out on her stroller for the first time ever!

She was sprinting off the CPAP machine and was just on her trach craddle and 2 litres of oxygen.

I remember the nurses instructing us that we could not take her outside, that we could only walk within the Unit. I told them that was once again, ridiculous.

I was not going to take my baby girl up and down the corridors of a unit filled with sick kids.

I was going to take her outside so she could actually breathe fresh air and feel the sunshine for the first time in her life. The doctors agreed that it was safe and reasonable.

The nurses were so nervous. I ignored them and walked away with my baby girl, smiling.

I was happy and enjoying the moment. I wasn’t going to let any of their unnecessary anxiety get to me or my baby girl. I had a full hour during her sprint off the CPAP machine to take her outside and I was beyond excited.

I knew deep inside that this was a very special moment. An unforgettable moment.

As I strolled down the main lobby of the hospital and towards the front doors, I felt as if I were in a dream. I had longed for that moment for months. For exactly 174 days.

I felt such joy and gratitude.

I will always remember my baby girl’s big brown eyes looking around at everything, discovering glimpses of the vast world outside her hospital room.

The expectations had been exceeded. The limits had been pushed. The obstacles had been overcome.

As I stepped outside the hospital with my baby girl for the very first time, I cried with happiness.

So many times I had watched other parents leaving the hospital with their babies…and now I was finally able to experience it myself. During that hour, nothing else mattered. The hospital disappeared, the nurses disappeared and the doctors disappeared.

It was just us.

As I looked at my baby girl in awe of everything around her, in awe of the breeze and the sunshine on her face, in awe of the big blue sky, in awe of life itself; I knew I was witnessing a miracle.

I knew everything would be alright. I knew my baby girl would be home soon.

Eyes

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Summer was near, it was early July and Malena Lola was over 2 months old.

After fully recovering from a serious lung infection, Malena Lola was back to her happy, feisty self. However, she was receiving pain medication now because she had and IV burn on her right foot.

I had gotten a call during the night and once again it was bad news – the IV she had on her foot had accidentally spread into her skin and caused a burn on her foot.

My heart sank.

The thought of her experiencing pain and nobody noticing made me sick to my stomach.

I rushed to the hospital. I ran into the NICU. The top of her right foot was swollen and burned. It looked awful. Her skin had turned dark red and almost black. They had put an ointment on it and she was on pain meds.

I was so upset… the doctors and nurses assured us that this hardly ever happened and that it shouldn’t have happened. Oh but it did happen. It happened to my baby girl. Her nurse had neglected to check on her and realize that her IV was gone and causing damage.

Just thinking about that made me feel a level of anger didn’t even know I was capable of. I tried to stay calm but I was visibly upset. I started crying.

I knew that anybody can make mistakes and all that jazz… but even if her nurse hadn’t caught the IV burn immediately, she should have caught it before it caused that much damage. It was simply not acceptable.

I asked to speak to the head nurse and demanded that the nurse who had failed to care for her IV properly be removed from our baby girl’s side for good.

I never wanted that nurse near my baby girl again.

The head nurse completely understood us and promised us to follow our request going forward.

Needless to say this did not make me feel any better… nothing changed the fact that my baby girl had to experience such unnecessary pain and that she would have a scar on her foot forever, as it was a 3rd degree burn. The doctor’s weren’t sure to what extent it may affect her foot’s mobility, as they weren’t sure if it had damaged the nerves at all. Only time would tell.

I remember looking at her burned foot and feeling real hate towards the nurse who had failed to care for my baby girl properly. I wanted to scream at her. I didn’t know who she was and I didn’t want to know…

I had to contain it all inside, as I didn’t want my baby girl to feel any more of the negativity from the situation. I knew that ultimately that wouldn’t change the fact that my baby girl was hurting. I knew I had to l let it go.

But first I had to let it out. I cried. I told my baby girl how sorry I was that she had suffered such a horrible burn. I told her I was sorry I wasn’t there to protect her. I told her I loved her and that she was safe.

It took me a very long time to forgive the nurse responsible for my baby girl’s burn…

It took me an even longer time to forgive myself for not being there to protect my baby girl…

I now had an even worse fear of leaving my baby girl at night in the NICU.

I knew I couldn’t stay there all the time with her, but I wasn’t ready to leave her that night.

I decided to spend the night with my baby girl at the NICU. I wasn’t ready to leave again. I would need more time.

I was feeling pretty exhausted from the move, but was glad it was over and done with. Baby girl had her own room in our new home and we could start painting it and decorating it now.

I remember having this sense of urgency to have her room ready for her. I don’t think I fully realized at the time that she would be in the hospital for quite a while longer and that we would have plenty of time to get her room ready.

For now, the only move baby girl would experience would be from one NICU to another NICU.

On July 5, 2011, baby girl was transferred from the Foothills Hospital NICU to the newly opened NICU at the Alberta’s Children Hospital.

It was a really good change because in the new NICU we had our own room with a window, which made a huge difference in us feeling less isolated from the outside world. I was able to hold my baby girl again, despite her having a critical tube due to critical airway. This had been a concern during kangaroo care, but I was able to get over my fear and guilt. I was able to push back doctor’s opinions. My baby girl needed to be held, that was part of her healing just as much as other things. I was relieved to hold her again. I was able to cuddle her under the sunlight coming through the window.

And I was happy to leave the memories of her terrible pneumonia and burned foot behind, at least symbolically…

As always during our journey, the happy moments were quickly followed by stressful moments.

The relaxing cuddle in our new room wouldn’t last long… as we had several scheduled doctors coming to see baby girl in the next few days.

First she would get her brain checked, then her airway and finally her eyes.

The doctors were eager to determine why she wasn’t able to extubate successfully.So were we.

Was it an airway issue?
Was it a neurological issue?

The latter had me very worried. It was terrifying to think that there might be a chance my baby girl had neurological problems of some sort. And she had had a small bleed in her brain a few days after she was born. It had healed itself and not required surgery, but the doctors weren’t able to determine any damage at that point. Yet again, only time would tell.

However, they doctors now wanted to do an MRI to check baby girl’s brain function because they thought maybe there was an issue there that may be causing her not to be able to breather successfully on her own. She had now had several failed extubations and they couldn’t figure out why.

For her MRI she needed to be taken be “packed” in a unique way so that she wouldn’t move at all during the MRI.

The transport nurse made her a little head protection with bunny ears.

She also needed special ear plugs to protect her from the MRI machine sound. I called her my little pilot cause I thought she looked like an airplane pilot.

She loved the feeling of being all wrapped up and fell right asleep. It was a relief to see her go so relaxed and not struggling.

I waited in her room. All I remember was praying to God that her brain was healthy.

Brad was at work but I kept updating him through text messages.

It didn’t take long for them to bring baby girl back. We would have the results shortly.

As I waited and cuddled my little angel, I told her that she was perfect and that everything was going to be alright.

The doctor came by and let me know that her MRI results were great. Her brain looked healthy and normal functioning.

I cried with happiness and relief.

I knew that I had to fully enjoy these brief yet powerful moments of joy because there was always another scary moment lurking around the corner…

The next day the specialized optometrist came to check her eyes and determined she had ROP – retinopathy of prematurity. She would require laser surgery right away to avoid retinal detachment and possible blindness.

Another surgery for our tiny but mighty warrior. Another risk for our baby girl going under general anesthesia.

It had to be done. Her eyes needed to be fixed and protected.

The optometrist scheduled baby girl’s surgery for the next day. It only took about an hour and it was very successful.

Baby girl’s ROP was fixed. The windows to her soul were healing.

We had to keep her room dark for a couple of days as her eyes were very sensitive.

Soon she would wake up and open her beautiful brown eyes. They were puffy and swollen, but healthy. The optometrist said she would monitor her eyes every month to make sure the ROP didn’t return, in which case she would need another surgery.

For now we were happy to know her eyes were healing and we were grateful the surgery had gone so well.

My beautiful brown eyed girl. I wished we could have had only happy moments and avoided all the scary moments…

But that was impossible.

The following week baby girl had a scheduled bronchoscopy to check her entire airway. This would be done in the OR and she would have to go under again.

The doctors wanted to try another extubation but first they wanted to check if there were any structural issues with her airway.

So once again our little champion was taken to the OR for her bronchoscopy.

While I waited in the post op area I felt as if I had been ran over by a bulldozer.

I realized how incredibly tired I was.

I felt like I couldn’t catch my breath during that month of July… It had been one thing after the other. There were times when I wished I could just grab my baby girl and run away.

I had fantasies of being able to go outside and walk down the street with my baby girl in arms, just like so many other parents did.

Instead, I got to spend my days at the NICU with my amazing baby girl who inspired me to get through it all right by her side.

The bronch didn’t take long and within the hour the ENT came to see us with the results. Baby girl’s airway looked great and her vocal chords were moving, which was great news because that meant she would be able to make sounds and speak in the future. The ENT did see some inflammation and scarring in the subglottic area, therefore they diagnosed her with possible acquired subglottic stenosis.

The ENT and pulmonary docs decided to do another round of steroids to help reduce the inflammation of the subglottic area and that way best prepare baby girl for a successful extubation.

The ENT and pulmonary docs didn’t see any reason why she wouldn’t be able to extubate successfully. The ENT believed that once she grew to about 2.5 kilos she would be able to extubate without problems. So we would have to wait a bit longer for the next planned extubation.

Everything they said was positive news except for one thing – they mentioned the possibility of baby girl needing a tracheostomy. Both the ENT, the pulmonary docs and the clinical docs agreed that if she were to fail her next extubation she would have to have a tracheostomy because she was now almost 4 months and it was necessary to remove the ET tube as it was startign to do more damage than good. Besides, she would be able to move more freely and maybe start feeding orally, once free from the ET tube.

It was now early August and baby girl was 2.5 kilos. The ENT planned her 14th extubation for August 9, exactly a day after her original due date of August 8.

We were excited and confident that you would have a successful extubation and be finally tube free. We prayed and stayed positive. We hoped that you would not need a tracheostomy.

Our hopes and prayers were not answered on August 9. Baby girl failed her 14th extubation.

At first it looked like she was breathing alright and both Brad and I were so happy to see our baby girl’s face free of the tapes and the ET tube again. But after just a few minutes she started working harder and harder to breathe. It was the most painful experience of my life. I couldn’t help my baby girl. I couldn’t keep her from needing a tracheostomy.

We were all heartbroken. We all knew what this failed extubation meant.

I wanted to cry. I wanted to scream. I wanted to be able to help my baby girl but all I could do is be strong for her. All I could do was love her with all my heart and hold her through one last intubation.

The doc decided to sedate her because she had been quite stressed during the extubation and now intubation. My little angel fell asleep.

I needed to go outside so he stayed with baby girl.

I sat on a bench outside the hospital and cried. I remember crying and not being able to stop.

Why wasn’t my baby girl able to breathe on her own?
Why did she have to have a tracheostomy?
Why did she have to suffer through all this?

I felt such sorrow, such anger. I let myself cry as long as I needed and then I gathered myself to go see baby girl again.

I was ready to be strong for her again. I wanted her to feel confident that the tracheostomy would be a good thing that would help her breathe on her own and grow.

I didn’t want to exude any fear or sadness to baby girl. I wanted her to feel only positivity from me.

And even though I felt defeated, I dug for some hope and faith deep in my heart.

I felt emotionally depleted, but I needed to be with my baby girl.

I went back into my baby girl’s room and held my tiny, mighty warrior.

As I looked into her bright brown eyes, I found all the strength and hope I needed.